Borderline Personality Disorder - The NICE GuideLine PDF
Borderline Personality Disorder - The NICE GuideLine PDF
Borderline Personality Disorder - The NICE GuideLine PDF
Personality
Disorder
THE NICE GUIDELINE ON TREATMENT AND MANAGEMENT
BORDERLINE
PERSONALITY
DISORDER:
TREATMENT AND
MANAGEMENT
National Clinical Practice Guideline Number 78
National Collaborating Centre for Mental Health
commissioned by the
National Institute for Health
& Clinical Excellence
published by
The British Psychological Society and The Royal College of
Psychiatrists
commissioned by
published by
Contents
CONTENTS
GUIDELINE DEVELOPMENT GROUP MEMBERS
ACKNOWLEDGEMENTS
1. PREFACE
1.1
National guideline
1.2
The national borderline personality disorder guideline
10
10
13
15
15
17
20
21
25
32
34
35
35
38
38
38
39
41
42
55
58
58
4. EXPERIENCE OF CARE
4.1
Introduction
4.2
Personal accounts
4.3
Review of the qualitative literature
4.4
Family and carer experience
4.5
Summary of themes
4.6
Clinical practice recommendations
59
59
59
81
93
96
99
Contents
5. PSYCHOLOGICAL AND PSYCHOSOCIAL TREATMENTS
IN THE MANAGEMENT OF BORDERLINE PERSONALITY
DISORDER
5.1
Introduction
5.2
Arts therapies
5.3
Brief psychological interventions
5.4
Complementary therapies
5.5
Individual psychological therapies
5.6
Combination therapy
5.7
Psychological therapy programmes
5.8
Therapeutic communities
5.9
Data by outcome
5.10 Overall clinical summary
5.11 Overall summary of economic evidence
5.12 Clinical practice recommendations
5.13 Research recommendations
101
101
115
117
124
126
144
153
175
188
204
206
207
208
211
211
218
230
246
254
257
260
278
283
296
296
297
297
7. MANAGEMENT OF CRISES
7.1
Introduction
7.2
Current practice
7.3
Reviewing the evidence base
7.4
General management of crises
7.5
Pharmacological management of crises
7.6
Management of insomnia
298
298
298
299
299
301
303
Contents
8. THE CONFIGURATION AND ORGANISATION OF SERVICES
8.1
Introduction
8.2
The role of specialist services
8.3
Risk factors for suicide in people with borderline
personality disorder
8.4
The role of inpatient services
8.5
Care pathway
8.6
Research recommendation
8.7
Special considerations for people with learning disabilities
8.8
Special considerations for people from black and
minority ethnic groups
9. YOUNG PEOPLE WITH BORDERLINE PERSONALITY
DISORDER
9.1
Introduction
9.2
Diagnosis
9.3
Stability of the diagnosis of borderline personality
disorder in young people
9.4
Suicide risk in young people with borderline
personality disorder
9.5
Assessment
9.6
Treatment
9.7
Service configuration
9.8
Suggested care pathway for young people with
borderline personality disorder
9.9
Overall clinical summary
9.10 Clinical practice recommendations
305
305
306
310
320
324
342
342
345
346
346
348
349
358
363
365
366
366
376
377
378
11. APPENDICES
393
12. REFERENCES
519
13. ABBREVIATIONS
552
Acknowledgements
ACKNOWLEDGEMENTS
The Borderline Personality Disorder Guideline Development Group and the National
Collaborating Centre for Mental Health (NCCMH) review team would like to thank
the following people:
Those who acted as advisers on specialist topics or have contributed to the process by
meeting with the Guideline Development Group:
Dr Andrew Cotgrove,
Cheshire and Wirral Partnership NHS Trust
Professor Kate Davidson,
University of Glasgow
Ms Jane Dudley,
South West London and St Georges Mental Health NHS Trust and The British
Association of Art Therapy
Professor Edzard Ernst,
Peninsula Medical School
Professor Roger Mulder,
University of Otago
Professor John Oldham,
The Menninger Clinic
Professor Kenneth Silk,
University of Michigan Health System
Professor Paul Soloff,
University of Pittsburgh
Dr Alison Wood,
Bolton Salford and Trafford Mental Health NHS Trust
Those who contributed personal accounts of their experiences of borderline personality disorder that have been included in this guideline.
Preface
1.
PREFACE
This guideline has been developed to advise on the treatment and management of
borderline personality disorder. The guideline recommendations have been developed
by a multidisciplinary team of healthcare professionals, service users, a carer and
guideline methodologists after careful consideration of the best available evidence. It
is intended that the guideline will be useful to clinicians and service commissioners
in providing and planning high-quality care for people with borderline personality
disorder while also emphasising the importance of the experience of care for them
and their families or carers (see Appendix 1 for more details on the scope of the
guideline).
Although the evidence base is rapidly expanding, there are a number of major
gaps, and future revisions of this guideline will incorporate new scientific evidence as
it develops. The guideline makes a number of research recommendations specifically
to address gaps in the evidence base. In the meantime, it is hoped that the guideline
will assist clinicians, people with borderline personality disorder and their
families/carers by identifying the merits of particular treatment approaches where the
evidence from research and clinical experience exists.
1.1
NATIONAL GUIDELINE
1.1.1
Preface
1.1.2
Guidelines are not a substitute for professional knowledge and clinical judgement.
They can be limited in their usefulness and applicability by a number of different
factors: the availability of high-quality research evidence, the quality of the methodology used in the development of the guideline, the generalisability of research
findings and the uniqueness of individuals with borderline personality disorder.
Although the quality of research in this field is variable, the methodology used
here reflects current international understanding on the appropriate practice for guideline development (AGREE: Appraisal of Guidelines for Research and Evaluation
Instrument; www.agreetrust.org; AGREE Collaboration [2003]), ensuring the collection and selection of the best research evidence available and the systematic generation of treatment recommendations applicable to the majority of people with these
disorders and situations. However, there will always be some service users for whom
clinical guideline recommendations are not appropriate and situations in which the
recommendations are not readily applicable. This guideline does not, therefore, override the individual responsibility of healthcare professionals to make appropriate
decisions in the circumstances of the individual, in consultation with the person with
borderline personality disorder or their family/carer.
In addition to the clinical evidence, cost-effectiveness information, where available, is taken into account in the generation of statements and recommendations of
the clinical guidelines. While national guidelines are concerned with clinical and cost
effectiveness, issues of affordability and implementation costs are to be determined
by the National Health Service (NHS).
In using guidelines, it is important to remember that the absence of empirical
evidence for the effectiveness of a particular intervention is not the same as evidence
for ineffectiveness. In addition, of particular relevance in mental health, evidencebased treatments are often delivered within the context of an overall treatment
programme including a range of activities, the purpose of which may be to help
engage the person and to provide an appropriate context for the delivery of specific
interventions. It is important to maintain and enhance the service context in which
these interventions are delivered; otherwise the specific benefits of effective interventions will be lost. Indeed, the importance of organising care in order to support
and encourage a good therapeutic relationship is at times as important as the specific
treatments offered.
1.1.3
The National Institute for Health and Clinical Excellence (NICE) was established as
a Special Health Authority for England and Wales in 1999, with a remit to provide a
single source of authoritative and reliable guidance for patients, professionals and the
public. NICE guidance aims to improve standards of care, to diminish unacceptable
variations in the provision and quality of care across the NHS and to ensure that the
health service is patient centred. All guidance is developed in a transparent and
11
Preface
collaborative manner using the best available evidence and involving all relevant
stakeholders.
NICE generates guidance in a number of different ways, three of which are relevant here. First, national guidance is produced by the Technology Appraisal
Committee to give robust advice about a particular treatment, intervention, procedure
or other health technology. Second, NICE commissions public health intervention
guidance focused on types of activity (interventions) that help to reduce peoples risk
of developing a disease or condition or help to promote or maintain a healthy lifestyle.
Third, NICE commissions the production of national clinical practice guidelines
focused upon the overall treatment and management of a specific condition. To enable
this latter development, NICE has established seven National Collaborating Centres
in conjunction with a range of professional organisations involved in healthcare.
1.1.4
This guideline has been commissioned by NICE and developed within the National
Collaborating Centre for Mental Health (NCCMH). The NCCMH is a collaboration
of the professional organisations involved in the field of mental health, national
patient and carer organisations, a number of academic institutions and NICE. The
NCCMH is funded by NICE and is led by a partnership between the Royal College
of Psychiatrists research and training unit and the British Psychological Societys
equivalent unit (Centre for Outcomes Research and Effectiveness).
1.1.5
Once a national guideline has been published and disseminated, local healthcare
groups will be expected to produce a plan and identify resources for implementation,
along with appropriate timetables. Subsequently, a multidisciplinary group involving
commissioners of healthcare, primary care and specialist mental health professionals,
service users and families/carers should undertake the translation of the implementation plan into local protocols taking into account both the recommendations set out in
this guideline and the priorities set in the National Service Framework (NSF) for
Mental Health and related documentation. The nature and pace of the local plan will
reflect local healthcare needs and the nature of existing services and existing local
therapeutic expertise and experience; full implementation may take a considerable
time, especially where substantial training needs are identified.
1.1.6
This guideline identifies key areas of clinical practice and service delivery for local
and national audit. Although the generation of audit standards is an important
and necessary step in the implementation of this guidance, a more broadly based
12
Preface
implementation strategy will be developed. Nevertheless, it should be noted that
the Care Quality Commission will monitor the extent to which Primary Care Trusts,
trusts responsible for mental health and social care and Health Authorities have
implemented these guidelines.
1.2
1.2.1
The GDG was convened by the NCCMH and supported by funding from NICE. The
GDG included two service users and a carer, and professionals from psychiatry, clinical psychology, general practice, nursing, psychiatric pharmacy and child and
adolescent mental health services (CAMHS).
Staff from the NCCMH provided leadership and support throughout the process
of guideline development, undertaking systematic searches, information retrieval,
appraisal and systematic review of the evidence. Members of the GDG received training in the process of guideline development from NCCMH staff, and the service users
and carer received training and support from the NICE Patient and Public
Involvement Programme. The NICE Guidelines Technical Adviser provided advice
and assistance regarding aspects of the guideline development process.
All GDG members made formal declarations of interest at the outset, which were
updated at every GDG meeting. The GDG met a total of 17 times throughout the
process of guideline development. It met as a whole, but key topics were led by a
national expert in the relevant topic. The GDG was supported by the NCCMH technical team, with additional expert advice from special advisers where needed. The
group oversaw the production and synthesis of research evidence before presentation.
All statements and recommendations in this guideline have been generated and
agreed by the whole GDG.
1.2.2
This guideline will be relevant for adults and young people with borderline personality disorder.
The guideline covers the care provided by primary, community, secondary, tertiary
and other healthcare professionals who have direct contact with, and make decisions
concerning, the care of adults and young people with borderline personality disorder.
The guideline will also be relevant to the work, but will not cover the practice, of
those in:
occupational health services
social services
forensic services
the independent sector.
13
Preface
The experience of borderline personality disorder can affect the whole family and
often the community. The guideline recognises the role of both in the treatment and
support of people with borderline personality disorder.
1.2.3
The guideline makes recommendations for the treatment and management of borderline personality disorder. It aims to:
evaluate the role of specific psychosocial interventions in the treatment of borderline personality disorder
evaluate the role of specific pharmacological interventions in the treatment of
borderline personality disorder
integrate the above to provide best-practice advice on the care of individuals with
a diagnosis of borderline personality disorder
promote the implementation of best clinical practice through the development of
recommendations tailored to the requirements of the NHS in England and Wales.
1.2.4
The guideline is divided into chapters, each covering a set of related topics. The first
three chapters provide an introduction to guidelines, the topic of borderline personality disorder and to the methods used to develop guidelines. Chapters 4 to 9 provide
the evidence that underpins the recommendations.
Each evidence chapter begins with a general introduction to the topic that sets the
recommendations in context. Depending on the nature of the evidence, narrative reviews
or meta-analyses were conducted, and the structure of the chapters varies accordingly.
Where appropriate, details about current practice, the evidence base and any research limitations are provided. Where meta-analyses were conducted, information is given about
both the interventions included and the studies considered for review. Clinical summaries
are then used to summarise the evidence presented. Finally, recommendations related to
each topic are presented at the end of each chapter. On the CD-ROM (see Text box 1 for
details), full details about the included studies can be found in Appendix 16. Where metaanalyses were conducted, the data are presented using forest plots in Appendix 17 and the
full GRADE evidence profiles can be found in Appendix 18.
Text box 1: Appendices on CD-ROM
14
Content
Appendix
Appendix 16
Forest plots
Appendix 17
Appendix 18
2.
2.1
THE DISORDER
The term borderline personality was proposed in the United States by Adolph Stern
in 1938 (most other personality disorders were first described in Europe). Stern
described a group of patients who fit frankly neither into the psychotic nor into the
psychoneurotic group and introduced the term borderline to describe what he
observed because it bordered on other conditions.
The term borderline personality organisation was introduced by Otto Kernberg
(1975) to refer to a consistent pattern of functioning and behaviour characterised by
instability and reflecting a disturbed psychological self-organisation. Whatever the
purported underlying psychological structures, the cluster of symptoms and behaviour associated with borderline personality were becoming more widely recognised,
and included striking fluctuations from periods of confidence to times of absolute
despair, markedly unstable self-image, rapid changes in mood, with fears of abandonment and rejection, and a strong tendency towards suicidal thinking and self-harm.
Transient psychotic symptoms, including brief delusions and hallucinations, may also
be present. The characteristics that now define borderline personality disorder were
described by Gunderson and Kolb in 1978 and have since been incorporated into
contemporary psychiatric classifications (see Section 2.2).
Either as a result of its position on the border of other conditions, or as a
result of conceptual confusion, borderline personality disorder is often diagnostically comorbid with depression and anxiety, eating disorders such as bulimia,
post-traumatic stress disorder (PTSD), substance misuse disorders and bipolar
disorder (with which it is also sometimes clinically confused). An overlap with
psychotic disorders can also be considerable. In extreme cases people can experience both visual and auditory hallucinations and clear delusions, but these are
usually brief and linked to times of extreme emotional instability, and thereby can
be distinguished from the core symptoms of schizophrenia and other related disorders (Links et al., 1989).
The level of comorbidity is so great that it is uncommon to see an individual
with pure borderline personality disorder (Fyer et al., 1988a). Because of this
considerable overlap with other disorders, many have suggested that borderline
personality disorder should not be classified as a personality disorder; rather it should
be classified with the mood disorders or with disorders of identity. Its association with
past trauma and the manifest similarities with PTSD have led some to suggest that
borderline personality disorder should be regarded as a form of delayed PTSD (Yen
& Shea, 2001). Despite these concerns, borderline personality disorder is a more
uniform category than other personality disorders and is probably the most widely
researched of the personality disorders. While some people with borderline personality disorder come from stable and caring families, deprivation and instability in
15
2.2
DIAGNOSIS
Borderline personality disorder is one of the most contentious of all the personality
disorder subtypes. The reliability and validity of the diagnostic criteria have been criticised, and the utility of the construct itself has been called into question (Tyrer,
1999). Moreover, it is unclear how satisfactorily clinical or research diagnoses actually capture the experiences of people identified as personality disordered (Ramon
et al., 2001). There is a large literature showing that borderline personality disorder
overlaps considerably with other categories of personality disorder, with pure
borderline personality disorder only occurring in 3 to 10% of cases (Pfohl et al.,
1986). The extent of overlap in research studies is particularly great with other socalled cluster B personality disorders (histrionic, narcissistic and antisocial). In addition, there is considerable overlap between borderline personality disorder and mood
and anxiety disorders (Tyrer et al., 1997; Zanarini et al., 1998).
This guideline uses the DSM-IV diagnostic criteria for borderline personality
disorder (APA, 1994), which are listed in Table 1. According to DSM-IV, the key
features of borderline personality disorder are instability of interpersonal relationships,
self-image and affect, combined with marked impulsivity beginning in early adulthood.
A stand-alone category of borderline personality disorder does not exist within the
International Classification of Diseases, 10th revision (ICD-10; World Health
Organization, 1992), although there is an equivalent category of disorder termed
emotionally unstable personality disorder, borderline type (F 60.31), which is characterised by instability in emotions, self-image and relationships. The ICD-10 category
does not include brief quasi-psychotic features (criterion 9 of the DSM-IV category).
Comparisons of DSM and ICD criteria when applied to the same group of patients
have shown that there is little agreement between the two systems. For example, in a
study of 52 outpatients diagnosed using both systems, less than a third of participants
received the same primary personality disorder diagnosis (Zimmerman, 1994). Further
modifications in the ICD and DSM are required to promote convergence between the
17
2.
A pattern of unstable and intense interpersonal relationships characterised by alternating between extremes of idealisation and devaluation.
3.
4.
5.
6.
7.
8.
9.
2.3
EPIDEMIOLOGY
2.3.1
Prevalence
Although borderline personality disorder is a condition that is thought to occur globally (Pinto et al., 2000), there has been little epidemiological research into the disorder outside the Western world. Only three methodologically rigorous surveys have
examined the community prevalence of borderline personality disorder. Coid and
colleagues (2006) reported that the weighted prevalence of borderline personality
disorder in a random sample of 626 British householders was 0.7%. Samuels and
colleagues (2002) found that in a random sample of 742 American householders the
weighted prevalence of borderline personality disorder was 0.5%. Torgersen and
colleagues (2001) reported a prevalence of 0.7% in a Norwegian survey of 2,053
community residents. Despite methodological differences between these studies,
there is remarkable concordance in their prevalence estimates, the median prevalence
of borderline personality disorder across the three studies being 0.7%. Only Torgersen
and colleagues 2001 study provides detailed information about the sociodemographic correlates of borderline personality disorder. In this study, there was a significant link between borderline personality disorder and younger age, living in a city
centre and not living with a partner. Interestingly, the assumption that borderline
personality disorder is over-represented among women was not supported by the data.
In primary care, the prevalence of borderline personality disorder ranges from 4
to 6% of primary attenders (Moran et al., 2000; Gross et al., 2002). Compared with
those without personality disorder, people with borderline personality disorder are
more likely to visit their GP frequently and to report psychosocial impairment. In
spite of this, borderline personality disorder appears to be under-recognised by GPs
(Moran et al., 2001).
In mental healthcare settings, the prevalence of all personality disorder subtypes
is high, with many studies reporting a figure in excess of 50% of the sampled population. Borderline personality disorder is generally the most prevalent category of
personality disorder in non-forensic mental healthcare settings. In community
samples the prevalence of the disorder is roughly equal male to female, whereas in
services there is a clear preponderance of women, who are more likely to seek treatment. It follows that the majority of people diagnosed with personality disorder, most
of whom will have borderline personality disorder, will be women.
Borderline personality disorder is particularly common among people who are
drug and/or alcohol dependent, and within drug and alcohol services there will be
more men with a diagnosis of borderline personality disorder than women. Borderline
personality disorder is also more common in those with an eating disorder (Zanarini
et al., 1998), and also among people presenting with chronic self-harming behaviour
(Linehan et al., 1991).
20
Many people who have at one time been given the diagnosis of borderline personality disorder are able to move on to live a fulfilling life. However, during the course of
the disorder people can have significant problems which mean that they require a
large amount of support from services and from those around them. The functional
impairment associated with borderline personality disorder appears to be a relatively
enduring feature of the disorder (Skodol et al., 2005). Studies of clinical populations
have shown that people with borderline personality disorder experience significantly
greater impairment in their work, social relationships and leisure compared with those
with depression (Skodol et al., 2002). However, studies of selected samples of people
with borderline personality disorder have shown that symptomatic improvement can
occur to the extent that a number of people will no longer meet the criteria for borderline personality disorder and that the prognosis may be better than has previously
been recognised (Zanarini et al., 2003).
People with borderline personality disorder may engage in a variety of destructive
and impulsive behaviours including self-harm, eating problems and excessive use of
alcohol and illicit substances. Self-harming behaviour in borderline personality disorder
is associated with a variety of different meanings for the person, including relief from
acute distress and feelings, such as emptiness and anger, and to reconnect with feelings
after a period of dissociation. As a result of the frequency with which they self-harm,
people with borderline personality disorder are at increased risk of suicide (Cheng et al.,
1997), with 60 to 70% attempting suicide at some point in their life (Oldham, 2006). The
rate of completed suicide in people with borderline personality disorder has been estimated to be approximately 10% (Oldham, 2006). A well-documented association exists
between borderline personality disorder and depression (Skodol et al., 1999; Zanarini
et al., 1998), and the combination of the two conditions has been shown to increase the
number and seriousness of suicide attempts (Soloff et al., 2000).
2.4
AETIOLOGY
The causes of borderline personality disorder are complex and remain uncertain. No
current model has been advanced that is able to integrate all of the available evidence.
The following may all be contributing factors: genetics and constitutional vulnerabilities; neurophysiological and neurobiological dysfunctions of emotional regulation
and stress; psychosocial histories of childhood maltreatment and abuse; and disorganisation of aspects of the affiliative behavioural system, most particularly the attachment system.
2.4.1
Genetics
Twin studies suggest that the heritability factor for borderline personality disorder is
0.69 (Torgersen et al., 2000), but it is likely that traits related to impulsive aggression
21
2.4.2
Neurotransmitters
2.4.3
Neurobiology
Evidence of structural and functional deficit in brain areas central to affect regulation,
attention and self-control, and executive function have been described in borderline
personality disorder. Areas include the amygdala (Rusch et al., 2003), hippocampus
(Tebartz van Elst et al., 2003) and orbitofrontal regions (Stein et al., 1993; Kunert
et al., 2003; De la Fuente et al., 1997). Most studies are performed without emotional
stimulation, however recent studies under conditions of emotional challenge suggest
22
2.4.4
Psychosocial factors
Family studies have identified a number of factors that may be important in the
development of borderline personality disorder, for example a history of mood disorders and substance misuse in other family members. Recent evidence also suggests
that neglect, including supervision neglect, and emotional under-involvement by
caregivers are important. Prospective studies in children have shown that parental
emotional under-involvement contributes to a childs difficulties in socialising and
perhaps to a risk for suicide attempts (Johnson et al., 2002). People with borderline
personality disorder (at least while symptomatic), significantly more often than
people without the disorder, see their mother as distant or overprotective, and their
relationship with her conflictual, while the father is perceived as less involved and
more distant. This suggests that problems with both parents are more likely to be the
common pathogenic influence in this group rather than problems with either parent
alone. While these findings should be replicated with those who have recovered from
borderline personality disorder, the general point about biparental difficulties being
important in the genesis of borderline personality disorder is given further support
from studies of abuse.
Physical, sexual and emotional abuse can all occur in a family context and high
rates are reported in people with borderline personality disorder (Johnson et al.,
1999a). Zanarini reported that 84% of people with borderline personality disorder
retrospectively described experience of biparental neglect and emotional abuse before
the age of 18, with emotional denial of their experiences by their caregivers as a
predictor of borderline personality disorder (Zanarini et al., 2000). This suggests that
these parents were unable to take the experience of the child into account in the
context of family interactions. Abuse alone is neither necessary nor sufficient for the
development of borderline personality disorder and predisposing factors and contextual features of the parent-child relationship are likely to be mediating factors in its
development. Caregiver response to the abuse may be more important than the abuse
itself in long-term outcomes (Horwitz et al., 2001). A family environment that
discourages coherent discourse about a childs perspective on the world is unlikely to
facilitate successful adjustment following trauma. Thus the critical factor is the family
environment. Studies that have examined the family context of childhood trauma in
borderline personality disorder tend to see the unstable, non-nurturing family environment as the key social mediator of abuse (Bradley et al., 2005b) and personality
dysfunction (Zweig-Frank & Paris, 1991).
Few of the studies point to how the features of parenting and family environment
create a vulnerability for borderline personality disorder, but they are likely to be part
23
2.4.5
Attachment process
The literature on the relationship between attachment processes and the emergence
of borderline personality disorder is broad and varies. For example, some studies
suggest that people are made more vulnerable to the highly stressful psychosocial
experiences discussed above by early inadequate mirroring and disorganised
attachment. This is likely to be associated with a more general failure in families
such as neglect, rejection, excessive control, unsupportive relationships, incoherence and confusion. While the relationship of diagnosis of borderline personality
disorder and specific attachment category is not obvious, borderline personality
disorder is strongly associated with insecure attachment (6 to 8% of patients with
borderline personality disorder are coded as secure) and there are indications of
disorganisation (unresolved attachment and inability to classify category of attachment) in interviews, and fearful avoidant and preoccupied attachment in questionnaire studies (Levy, 2005). Early attachment insecurity is a relatively stable
characteristic of any individual, particularly in conjunction with subsequent
negative life events (94%) (Hamilton, 2000; Waters et al., 2000; Weinfield et al.,
2000). Given evidence of the continuity of attachment from early childhood, at
least in adverse environments, and the two longitudinal studies following children
from infancy to early adulthood (which reported associations between insecure
attachment in early adulthood and borderline personality disorder symptoms
[Lyons-Ruth et al., 2005]), childhood attachment may indeed be an important
factor in the development of borderline personality disorder. Fonagy and
colleagues (2003) suggest that adverse effects arising from insecure and/or disorganised attachment relationships, which may have been disrupted for many
reasons, are mediated via a failure in development of mentalising capacity a
social cognitive capacity relating to understanding and interpreting ones own and
others actions as meaningful on the basis of formulating what is going on in ones
own and the other persons mind.
This formulation overlaps with the importance of the invalidating family environment suggested by Linehan (1993) as a factor in the genesis of borderline personality disorder and further developed by Fruzzetti and colleagues (2003; 2005). Fruzzetti
and colleagues report that parental invalidation, in part defined as the undermining of
self-perceptions of internal states and therefore anti-mentalising, is not only associated with the young persons reports of family distress, and their own distress and
psychological problems, but also with aspects of social cognition, namely the ability to identify and label emotion in themselves and others. Along with other aspects
contributing to the complex interaction described as invalidating, there is a systematic undermining of a persons experience of their own mind by that of another.
There is a failure to encourage the person to discriminate between their feelings and
24
2.4.6
Conclusion
2.5
2.5.1
General adult mental health services in England and Wales offer varying levels of
service provision for people with personality disorder. England and Wales have a
health service in which personality disorder services are considered to be an integral
part. As the decision to expand services to include the treatment of personality disorder was only made in 2003 the development of these services remains patchy and, in
some areas, rudimentary. Although these services are for personality disorder generally, most users seeking services are likely to have a diagnosis of borderline personality disorder and this is anticipated in the service provision.
The programme in England includes the development of innovative psychosocial
approaches to treatment, national service pilot projects and a workforce and training
programme. The long-term plan is to develop capacity for specific personality services in all parts of the country.
2.5.2
Pharmacological treatment
2.5.3
Psychological interventions
28
Arts therapies
Arts therapies developed mainly in the US and Europe. They have often been delivered as part of treatment programmes for people with personality disorders including
those with borderline personality disorder. Arts therapies include art therapy, dance
movement therapy, dramatherapy and music therapy which use arts media as its
primary mode of communication; these four therapies are currently provided in the
UK. Arts therapies are normally undertaken weekly, and a session lasts 1.5 to 2 hours.
Patients are assessed for group (typically four to six members) or individual therapy.
The primary concern is to effect change and growth through the use of the art form in
a safe and facilitating environment in the presence of a therapist. Arts therapies can
help those who find it hard to express thoughts and feelings verbally. Traditionally,
art therapy is thought of as working with primitive emotional material that is preverbal in nature, and thus made available to exploration and rational thought. The
nature of the therapists work can thus be similar to the interpretations of psychoanalysis, or less interpretative and more supportive, to enable patients to understand
what they want to understand from the work. For people with more severe borderline
personality disorder, it is generally accepted that plunging interpretations without
sufficient support are unlikely to be helpful (Meares & Hobson, 1977).
Arts therapies are more concerned with the process of creating something, and the
emotional response to this and/or the group dynamics of this. This can be very active
(involving the physical characteristics of the art work and movement), playful,
symbolic, metaphorical or lead directly to emotions that need to be understood. Such
understanding may be achieved through subsequent discussion, and the use of the art
materials when helpful.
2.5.5
Therapeutic communities
29
2.5.6
Other therapies
This section includes various modalities that are not part of the general psychological
treatments for borderline personality disorder. Group analytic psychotherapy, humanistic and integrative psychotherapy and systemic therapy can all be routinely
employed in work with people with personality disorder, either as stand-alone therapies for less complex cases or as part of multidisciplinary packages of care or longterm pathways for those with more intractable or severe conditions.
Group analytic psychotherapy
This is also often known simply as group therapy. It is characterised by non-directive groups (without pre-determined agendas), in which the relationships between the
members, and the members and the therapist (conductor), comprise the main therapeutic tool. Such groups generally, and deliberately, build a strong esprit de corps and
are both strongly supportive and deeply challenging. The membership of a group is
fairly constant, with each member staying typically for 2 to 5 years. Suitably qualified group therapists (to United Kingdom Council for Psychotherapy [UKCP] standards) undergo at least 4 years training, have regular clinical supervision and
undertake continuing professional development (CPD) activities.
The group process can help prevent hazardous therapeutic relationships developing with a therapist, as can happen in individual therapy with people with severe
personality disorders. They can actively address relationship difficulties that are
manifest live in the group, and they can avoid difficult dependency by helping
participants to take responsibility for themselves by first sharing responsibility for
each other and later learning how to ask for help for themselves, in an adaptive way.
Disadvantages include difficulty in initiating participation because of the fear of
personal exposure; problems of finding a regular suitable meeting space; and issues
of confidentiality.
Humanistic and integrative psychotherapies
These are therapies based on a variety of theoretical models that evolved in the
mid-20th century as alternatives to the dominant model of psychoanalysis. There
is a significant overlap with the term action therapies, which has increasing
currency. They include: psychodrama, which is group-based and aims to understand particularly difficult past emotional episodes and link them to current
31
2.6
MULTI-AGENCY PERSPECTIVE
2.6.1
The perceived enduring and chronic nature of personality disorder poses a challenge
to a healthcare system that is historically, and to a large extent still is, strongly
32
2.6.2
In line with the NSF for Mental Health (Department of Health, 1999a) the National
Institute for Mental Health in England (NIMHE) produced policy implementation
guidance for the development of services for people with personality disorder
(Department of Health, 2003). The main purpose of this document was:
to assist people with personality disorder who experience significant distress or
difficulty to access appropriate clinical care and management from specialist
mental health services
to ensure that offenders with a personality disorder receive appropriate care from
forensic services and interventions designed both to provide treatment and to
address their offending behaviour
to establish the necessary education and training to equip mental health practitioners to provide effective assessment and management. (Department of Health, 2003).
The Personality Disorder Capabilities Framework (NIMHE, 2003) soon followed.
This document set out a framework to support the development of the skills that would
enable practitioners to work more effectively with people with personality disorders.
It also aimed to provide a framework to support local and regional partners to deliver
appropriate education and training (NIMHE, 2003). This document did not focus
solely on the needs of NHS organisations; it had a wider remit to include all agencies
that had contact with people who met the diagnosis. These two documents, along with
investments in pilot personality disorder services and training initiatives, have
signalled a significant change in the perspective of the NHS on personality disorder
and have led to its commitment to enhance and improve its service.
2.6.3
Social services
The role of social services, in providing care and support to people with mental health
problems, covers a wide range of people, from those with mild mental health problems to people with severe and enduring mental disorders (Department of Health,
1998). Historically, care provided by social services is determined by the persons
social need and is less influenced by diagnosis and the biological paradigm than the
NHS. After the 1998 White Paper on modernising social services (Department of
33
2.6.4
In law, personality disorder is generally seen as distinct from serious mental illness
because it is not considered to reduce the persons capacity to make decisions (Hart,
2001). Instead, it is thought of as an aggravating condition (Hart, 2001). Nevertheless,
new legislation in the Mental Health Act amendment (HMSO, 2007) and the Mental
Capacity Act (HMSO, 2005) will change both the rights and protections for people
with personality disorders and their access to services. However, the legal position
that people with personality disorder have held throughout the history of psychiatry
has undoubtedly influenced the perspective of the criminal justice system regarding
personality disorder and goes some way to explain why most people with personality
disorder would generally find themselves in the criminal justice system as opposed to
forensic mental health services. It is not uncommon within forensic mental health
services for regional secure units to actively exclude patients with a primary diagnosis of personality disorder, because they do not consider this to be their core business
(Department of Health, 2003). In many parts of the country there are no specific services, and, when services are offered, they tend to be idiosyncratic.
In March 1999, a report commissioned by the Department of Health about the
future organisation of prison healthcare (Department of Health, 1999b) proposed that
people in prison should have access to the same quality and range of services (including mental health) as the general public (Department of Health, 1999b). In the same
year the NSF called for closer partnerships between prisons and the NHS at local,
regional and national levels (Department of Health, 1999a). The emphasis was on a
move towards the NHS taking more responsibility for providing mental healthcare in
prisons and establishing formal partnerships.
In July 1998, the Secretary of State announced a review of the 1983 Mental Health
Act (Department of Health, 1983), triggered by concerns that current legislation did
not support a modern mental health service. These concerns were reiterated in the
NSF for mental health since neither mental health nor criminal justice law currently
provides a robust way of managing the small number of dangerous people with severe
personality disorder (Department of Health, 1999a).
2.7
YOUNG PEOPLE
2.8
There are particular issues for people with borderline personality disorder regarding
the diagnosis, the label and associated stigma, which can have an impact on people
accessing services and receiving the appropriate treatment. These issues are fully
explored in Chapter 4, which comprises personal accounts from people with personality disorder and from a carer, and a review of the literature of service user and
family/carer experience.
The families and carers of people may also feel unsupported in their role by
healthcare professionals and excluded from the service users treatment and care. The
issues surrounding this are also further explored in Chapter 4. Although there are
debates around the usefulness and applicability of the word carer, this guideline
uses the term families/carers to apply to all people who have regular close contact
with the person and are involved in their care.
2.9
ECONOMIC IMPACT
Besides functional impairment and emotional distress, borderline personality disorder is also associated with significant financial costs to the healthcare system, social
services and the wider society. The annual cost of personality disorders to the NHS
was estimated at approximately 61.2 million in 1986 (Smith et al., 1995). Of this,
91% accounted for inpatient care. Another study conducted in the UK, estimated the
costs of people with personality disorders in contact with primary care services
(Rendu et al., 2002). The study reported that people with personality disorders
incurred a cost of around 3,000 per person annually, consisting of healthcare costs
and productivity losses; in contrast, the respective cost incurred by people without
personality disorders in contact with primary care services was 1,600 (1998/99
prices). In both groups, productivity losses accounted for over 80% of total costs.
Dolan and colleagues (1996) assessed the cost of people with personality disorders
admitted to a UK hospital over 1 year prior to admission; this cost was reported to
reach 14,000 per person (1992/93 prices), including inpatient and outpatient healthcare costs, as well as prison-related costs (which amounted to approximately 10% of
35
37
3.
3.1
OVERVIEW
The development of this guideline drew upon methods outlined by NICE (The
Guidelines Manual1 [NICE, 2006b]). A team of healthcare professionals, lay representatives and technical experts known as the Guideline Development Group (GDG),
with support from the NCCMH staff, undertook the development of a person-centred,
evidence-based guideline. There are six basic steps in the process of developing a
guideline:
define the scope, which sets the parameters of the guideline and provides a focus
and steer for the development work
define clinical questions considered important for practitioners and service users
develop criteria for evidence searching and search for evidence
design validated protocols for systematic review and apply to evidence recovered
by the search
synthesise and (meta-) analyse data retrieved, guided by the clinical questions,
and produce evidence profiles
answer clinical questions with evidence-based recommendations for clinical
practice.
The clinical practice recommendations made by the GDG are therefore derived
from the most up-to-date and robust evidence base for the clinical and cost effectiveness of the treatments and services used in the treatment and management of borderline personality disorder. In addition, to ensure a service user and family/carer focus,
the concerns of service users and families/carers regarding health and social care have
been highlighted and addressed by recommendations agreed by the whole GDG.
3.2
THE SCOPE
Guideline topics are selected by the Department of Health and the Welsh Assembly
Government, which identify the main areas to be covered by the guideline in a
specific remit (see The Guideline Development Process An Overview for Stakeholders,
the Public and the NHS (Second Edition) [NICE, 2006c]2). The remit for this guideline was translated into a scope document by staff at the NCCMH.
1Available
2Available
38
from www.nice.org.uk
from: www.nice.org.uk
3.3
3.3.1
Seventeen GDG meetings were held between January 2007 and September 2008.
During each day-long GDG meeting, in a plenary session, clinical questions and clinical and economic evidence were reviewed and assessed, and recommendations
formulated. At each meeting, all GDG members declared any potential conflicts of
interest, and service user and carer concerns were routinely discussed as part of a
standing agenda.
3.3.2
Topic groups
The GDG divided its workload along clinically relevant lines to simplify the guideline development process, and GDG members formed smaller topic groups to undertake guideline work in that area of clinical practice. Topic group 1 covered questions
relating to pharmacological interventions; topic group 2 covered psychological therapies (with a sub-group covering therapeutic communities); topic group 3 covered
39
3.3.3
Individuals with direct experience of services gave an integral service user/carer focus
to the GDG and the guideline. The GDG included two former service users and one
carer. They contributed as full GDG members to writing the clinical questions, helping to ensure that the evidence addressed their views and preferences, highlighting
sensitive issues and terminology relevant to the guideline, and bringing service
user/carer research to the attention of the GDG. In drafting the guideline, they
contributed to writing a chapter on service user and family/carer issues for the full
guideline, and to formulating recommendations from the service user and
family/carer perspective.
3.3.4
Special advisors
Special advisors, who had specific expertise in one or more aspects of treatment and
management relevant to the guideline, assisted the GDG, commenting on specific
aspects of the developing guideline, including attending topic group meetings and
teleconferences if appropriate. Appendix 3 lists those who acted as special advisors.
3.3.5
National and international experts in the area under review were identified through
the literature search and through the experience of the GDG members. These experts
were contacted to recommend unpublished or soon-to-be published studies in order
to ensure up-to-date evidence was included in the development of the guideline. They
informed the group about completed trials at the pre-publication stage, systematic
reviews in the process of being published, studies relating to the cost effectiveness of
treatment and trial data if the GDG could be provided with full access to the complete
trial report. Appendix 5 lists researchers who were contacted.
40
Peer reviewers
Peer reviewers were identified by the GDG to review the guideline during the consultation phase, as well as stakeholders. In addition, the review of pharmacological treatments was sent to international experts for peer review during the guideline
development process because this section of the guideline was completed ahead of
time and the draft recommendations were potentially controversial because they
contradicted current clinical opinion. Therefore peer reviewers who were leaders in
the field were appointed; they were named as special advisers to ensure that confidentiality was maintained (see Appendix 3). Their comments and responses from the
GDG are presented in Appendix 11.
3.4
CLINICAL QUESTIONS
Clinical questions were used to guide the identification and interrogation of the evidence
base relevant to the topic of the guideline. Before the first GDG meeting, draft questions
were prepared by NCCMH staff based on the scope. They were then discussed by
the GDG at their first two meetings and a final list drawn up. Where appropriate, the
questions were refined once the evidence had been searched and, where necessary, subquestions were generated. The final list of clinical questions can be found in Appendix 6.
For questions about interventions, the PICO (patient, intervention, comparison and
outcome) framework was used. This structured approach divides each question into
four components: the patients (the population under study), the interventions (what is
being done), the comparisons (other main treatment options) and the outcomes (the
measures of how effective the interventions have been) (see Text box 2).
Text box 2: Features of a well-formulated question on effectiveness
intervention the PICO guide
Patients/population
Intervention
Comparison
Outcome
41
Effectiveness or other
impact of an intervention
Accuracy of information
(for example, risk factor,
test, prediction rule)
The aim of the clinical literature review was to systematically identify and synthesise
relevant evidence from the literature in order to answer the specific clinical questions
developed by the GDG. Thus, clinical practice recommendations are evidence-based,
where possible. If evidence was not available, informal consensus methods were used
(see Section 3.5.9) and the need for future research specified.
3.5.1
Methodology
42
from www.nice.org.uk
3.5.2
After the scope was finalised, a more extensive search for existing systematic reviews
and published guidelines was undertaken to inform the review process. The review
team, in conjunction with the GDG, assessed the available existing systematic reviews
for relevance to the clinical questions. This helped to assess the quantity and likely
quality of available primary research. The initial approach taken to locating primarylevel studies depended on the type of clinical question and availability of evidence.
The GDG then decided which questions were best addressed by good practice
based on expert opinion, which questions were likely to have a good evidence base
and which questions were likely to have little or no directly relevant evidence.
Recommendations based on good practice were developed by informal consensus of
the GDG. For questions with a good evidence base, the review process depended on
the type of key question. For questions that were unlikely to have a good evidence
base, a brief descriptive review was initially undertaken by a member of the GDG.
Searches
The standard mental health related bibliographic databases were searched including
EMBASE, MEDLINE, PsycINFO, and Central, together with the grey literature database HMIC. Search filters developed by the review team consisted of a combination
of subject heading and free-text phrases. Specific filters were developed for the
guideline topic and, where necessary, for individual clinical questions (see relevant
chapters for details). The topic-specific filters were combined with appropriate
research design filters developed for systematic reviews, RCTs and other appropriate
research designs (Appendix 7).
The review team also scanned the reference lists of included studies and existing
systematic reviews for additional references, together with evidence submitted by stakeholders. Unpublished evidence was also sought (see below). In addition, the tables of
contents of appropriate journals were checked regularly for relevant studies. Searches
for evidence were re-run every 6 months during the guideline development process with
the final search undertaken between 6 and 8 weeks before submission of the consultation drafts. After this point, studies were included only if they were judged by the GDG
to be exceptional (for example, the evidence was likely to change a recommendation).
43
GDG tasks
Brief search for recent systematic reviews
to help inform the development of the scope
No. of citations
excluded; No. that
could not be located
No. of citations
excluded
No
<5000 hits
Yes
Scan titles and abstracts & apply eligibility
criteria liberally; cross-check excluded
No. of citations
excluded
Check systematic reviews for
additional evidence
45
3.5.3
Outcomes
3.5.4
Data extraction
Outcome data were extracted from all eligible studies, which met the quality criteria,
using a standardised form (see Appendix 8). Study characteristics were also extracted
into an Access database. Full study characteristics are in Appendix 16 with summary
tables in the evidence chapters.
For a given outcome (continuous and dichotomous), where more than 50% of the
number randomised to any group were not accounted for4 by trial authors, the data
were excluded from the review because of the risk of bias. However, where possible,
dichotomous efficacy outcomes were calculated on an intention-to-treat (ITT) basis
(that is, a once-randomised-always-analyse basis). This assumes that those participants who ceased to engage in the studyfrom whatever grouphad an
4Accounted
for in this context means using an appropriate method for dealing with missing data (for
example, last observation carried forward or a regression technique).
46
3.5.5
Where possible, meta-analysis was used to synthesise the evidence using Review
Manager 4.2.8 (Cochrane Collaboration, 2005). If necessary, reanalyses of the data or
sub-analyses were used to answer clinical questions not addressed in the original
studies or reviews.
5Based
47
Study
or sub-category
Intervention A
n/N
Control
n/N
RR (fixed)
95% CI
Weight
%
RR (fixed)
95% CI
0.5
Favours intervention
Favours control
Intervention A
Mean (SD)
Control
Mean (SD)
SMD (fixed)
95% CI
Weight
%
SMD (fixed)
95% CI
Favours intervention
Favours control
To check for consistency between studies, both the I2 test of heterogeneity and a
visual inspection of the forest plots were used. The I2 statistic describes the proportion of total variation in study estimates that is due to heterogeneity (Higgins &
Thompson, 2002). The I2 statistic was interpreted in the following way:
50%: notable heterogeneity (an attempt was made to explain the variation, for
example outliers were removed from the analysis or sub-analyses were conducted
to examine the possibility of moderators. If studies with heterogeneous results
48
3.5.6
Summary characteristics tables and, where appropriate, forest plots generated with
Review Manager 4.2.8 (Cochrane Collaboration, 2005) were presented to the GDG in
order to prepare an evidence profile for each review and to develop recommendations.
49
3.5.7
51
Study Ids
Tyrer 2003
MACT
Tyrer 2003
MACT
Tyrer 2003
MACT
Psych 01 MADRS
03.02 (MACT vs
TAU)
Psych 02 HADS
03.02 depression
(MACT vs
TAU)
Depression measures
Psych 01 HADS
03.01 anxiety
Anxiety Measures
Forest Description
plot
SIGN 1 N/A
SIGN 1 N/A
31/33
Sparse,
31/33
skewed and
inconclusive
data (2)
WMD 0.74
(4.42, 5.9)
WMD 0.69
(2.12, 3.5)
SMD 0.12
(0.37, 0.61)
WMD 0.06
(2.29, 2.41)
Absolute
statistic
(WMD)
SMD 0.07
(0.42, 0.56)
SMD 0.01
(0.48, 0.5)
Sparse,
31/33
skewed and
inconclusive
data (2)
Sparse
data (1)
SIGN 1 N/A
Quality
Inconclusive
Inconclusive
Unlikely
Continued
Very low
Very low
Moderate
Likelihood of
Overall
clinically
quality
important effect
52
Study Ids
Quality
Tyrer 2003
MACT
SIGN 1
N/A
N/A
N/A
15/13
Sparse
data (1)
34/36
RR 0.97
(0.88, 1.07)
94%
Unlikely
Moderate
Very low
Likelihood of
Overall
clinically
quality
important effect
Moderate
Absolute
statistic
(WMD)
Sparse,
skewed and 15/15
inconclusive
data (2)
Sparse and
skewed
data (1)
Forest Description
plot
Table 3: (Continued)
Yes
No
but statistically
significant*
[CS1]
Very likely to be
clinically significant
[CS2]
Likely to be
clinically significant
YES
NO
No
and the CI completely
excludes clinically
significant effects
Yes
[CS3]
Unlikely to be
clinically
significant
[CS4]
Inconclusive
*Efficacy outcomes with large effect sizes and very wide confidence intervals should be
interpreted with caution and should be described as inconclusive (CS4), especially if
there is only one small study.
to be the threshold, then a point estimate of 0.73 (as can be seen in Figure 1), would
meet the criteria for clinical significance. Where heterogeneity between studies was
judged problematic, in the first instance an attempt was made to explain the cause of
the heterogeneity (for example, outliers were removed from the analysis or sub-analyses
were conducted to examine the possibility of moderators). Where homogeneity could
not be achieved, a random-effects model was used.
53
3.5.8
Once the evidence profile tables relating to a particular clinical question were
completed, summary tables incorporating important information from the evidence
profile and an assessment of the clinical significance of the evidence were produced
(these tables are presented in the evidence chapters). Finally, the systematic reviewer
along with the topic group lead produced a clinical summary. Once the evidence
profile tables and clinical summaries were finalised and agreed by the GDG, the associated recommendations were produced, taking into account the trade-off between the
benefits and risks as well as other important factors. These included economic considerations, values of the development group and society, and the GDGs awareness of
practical issues (Eccles et al., 1998).
3.5.9
In the absence of level I evidence (or a level that is appropriate to the question), or
where the GDG were of the opinion (on the basis of previous searches or their knowledge of the literature) that there were unlikely to be such evidence, either an informal
or formal consensus process was adopted. This process focused on those questions
that the GDG considered a priority.
Informal consensus
The starting point for the process of informal consensus was that a member of the
topic group identified, with help from the systematic reviewer, a narrative review that
most directly addressed the clinical question. Where this was not possible, a brief
review of the recent literature was initiated.
54
3.6
The aim of the health economics was to contribute to the guidelines development by
providing evidence on the cost effectiveness of interventions for people with borderline personality disorder covered in the guideline. For this reason, a systematic literature review of existing economic evidence in this area was conducted.
3.6.1
Search strategy
3.6.2
Inclusion/exclusion criteria
assessed, and provided that the studys data and results were extractable; poster
presentations or abstracts were excluded from the review.
Full economic evaluations that compared two or more relevant options and
considered both costs and consequences (that is, costconsequence analyses, costeffectiveness analyses, costutility analyses or costbenefit analyses) as well as
partial economic evaluations (that is, costing analyses) were included in the
systematic review.
Economic studies that omitted intervention costs from the analysis were excluded
from the review because their results were considered potentially misleading.
3.6.3
Data extraction
Data were extracted by the health economist using a standard economic data extraction form (Appendix 14).
3.6.4
3.6.5
Economic modelling
3.7
STAKEHOLDER CONTRIBUTIONS
3.8
Registered stakeholders commented on the draft guideline, which was posted on the
NICE website during the 8-week consultation period. The GRP also reviewed the
guideline and checked that stakeholders comments had been addressed.
Following the consultation period, the GDG finalised the recommendations and
the NCCMH produced the final documents. These were then submitted to NICE.
NICE then formally approved the guideline and issued its guidance to the NHS in
England, Wales and Northern Ireland.
58
Experience of care
4.
EXPERIENCE OF CARE
4.1
INTRODUCTION
4.2
PERSONAL ACCOUNTS
4.2.1
Introduction
This section contains first-hand personal accounts from people with borderline
personality disorder and a carer. The accounts offer different perspectives of the disorder: accounts A and B are written by former service users (both female); accounts
C (male) and D (female) are written by current service users; and account E is from
the mother of the author of account C. The writers of the accounts were contacted
through the service user contacts on the GDG; they were asked to write about their
experiences of diagnosis, accessing services and treatment, their relationship with
healthcare professionals, and self-help and support during a crisis. Each author signed
a consent form allowing the account to be reproduced in this guideline.
4.2.2
Personal account A
Id been a troubled kid from about the age of 9. My Dad worked away a lot and I had a
difficult relationship with my Mum; we clashed and there was limited physical affection
59
Experience of care
between us as I got older. In general though, I would say that I had a spoilt, middleclass upbringing with no material hardships. Despite this I was still unable to cope with
the out-of-control emotions inside of me. Looking back I am able to describe these
emotions as anger, but at the time I didnt know what they were and they terrified me.
I was hurt and lonely but didnt have the words to express how I felt or what I needed.
I remember the first time I started cutting myself. I was sitting in the school field
at break time and rubbing a piece of glass up and down my arm. It hurt but the pain
felt comforting and it focused my emotions on that point of my skin. When I bled it
felt like all the bad feelings just flowed out of me.
From then on, it was as if I had found my escape mechanism. I never had to deal
with out-of-control panic, fear, anger, rage or vulnerability again. I could just bleed.
By my late teens I was an empty shell. I felt nothing any more, and no one could reach
me or hurt me. I lived in a strange, safe, isolated world.
In my isolated world all communication shut down. At home I could count the
number of words passing between my Mum and me each day on the fingers of one
hand. At school I had friends and was academically successful but people were suspicious about the number of injuries I was developing.
One of my friends had read an article about self-harm and questioned me about it.
Even though I was the one putting the razor blade against my arm, I was unable to
accept that people would actually cut themselves on purpose and denied it. Teachers
became involved but I think my horror at the suggestion of self-harm encouraged
almost everyone to believe I was just clumsy.
From school I went on to medical school to train as a doctor. University is a challenging place for someone who struggles with emotions and relationships, and my
cutting and other self-injurious behaviour increased quite dramatically in order for me
to continue, but I did continue and was getting by. When I first started university I felt
as though I had to re-learn how to talk to people I had shut down so much that I
didnt think I could communicate on a social level.
In my second year at university, I was attacked and raped on the way home from
a student party. Life started to spiral out of control for me at this point. The bigger my
inner turmoil the stronger the need was to bleed. I started making deeper and deeper
cuts, sometimes I would go through arteries and need to be hospitalised. I could no
longer be described as getting by.
After one such incident I was visited in hospital by a psychiatrist and taken by taxi
to the local psychiatric clinic. This was a serious shock to the system I felt I was
descending into an unknown and terrifying world of loonies and nutters, and
someone thought I was one of them.
I was immediately prescribed chlorpromazine along with assorted antidepressants
and the side effects left me feeling at home in the asylum very quickly. My legs were
twitchy and my whole body felt lethargic. I wandered around dragging my feet with
my head hung low, and soon relaxed into day room behaviour of cigarette smoking,
rocking and leg twitching. The drugs had the effect of numbing both my mind and my
body and I was able to get through my days without feeling desperately self-destructive.
It was not a good way to be seen by friends though, and I dont think my partner and
flatmates ever really got over seeing me like that.
60
Experience of care
I was diagnosed with post-traumatic stress disorder and depression. I started a
course of psychotherapy at the same time, stayed at the clinic for a few weeks and
then went back home. I continued with the therapy and my clinical studies but the two
didnt combine very well. Psychotherapy can leave you very raw as you deal with any
number of complex issues from the past. As Ive said before, I didnt deal well with
emotion; it was as if I hadnt been taught how to recognise it or deal with it.
I had a very good relationship with my psychotherapist; I trusted her and felt we
were getting somewhere, but the trouble with psychotherapy is that you often feel a
lot worse before you start to feel better. I had been seeing her for some months when
she announced that she was going to have to hand me over to another therapist as she
had to move away. I think this came at quite a tough point in the therapy and it coincided with an escalation in my self-harming.
I was spiralling out of control, becoming hugely self-destructive and suicidal and
I was quickly readmitted to hospital. I spent a number of days on constant observation, with a nurse staying with me every second of the day, but I still managed to harm
myself. It was getting to the point where members of staff were actually putting themselves at risk in order to prevent me from destroying myself.
At this point my psychotherapist called my parents and told them that she didnt
believe I would still be alive to see my birthday at the end of the month. I didnt see
my parents very often but they had visited me once at the clinic for a family session
with my psychotherapist. I cant imagine how they handled this news. Even now that
all this is behind us and we enjoy a good bond, I still feel desperately guilty for
putting them through that entire trauma.
Shortly before my 22nd birthday I was called into a room with my psychotherapist and GP. They sectioned me and I was taken away to a regional secure unit for my
own safety. A secure unit is effectively a medical prison for the criminally mentally
ill; it is no place for a distressed, depressed and self-destructive individual. I cannot
really complain that my psychotherapist sent me there though; I think in part she was
desperately trying to ensure my safety she felt a certain amount of responsibility as
she had to move on, and there really werent any suitable alternatives at the time.
At the secure unit I found myself on a mixed ward with rapists and arsonists and
for the second time I felt out of place. Despite the rigorous searches and removal of
all my belongings, I still managed to secure razor blades. As a result, I was strip
searched and I spent the next few days sleeping naked on a bomb-proof mattress on
the floor of a padded cell, while under permanent observation.
It was here in the secure unit that the forensic psychiatrist gave me the label of
borderline personality disorder. Given the nature of my surroundings I felt that I was
being punished I was locked up with people who had committed crimes and my
core being, my personality, was under attack.
This particular crisis period was time limited (my panic was related to my birthday), so when that day finally passed safely I began to take control of myself again.
I could get though the day without focusing entirely on ways of disposing of myself
and instead I began to look for ways to get out. Thankfully I didnt stay at the secure
unit for very long. I had already started to appeal for my section to be quashed, but
the staff also felt I was not in the best place they felt somewhat compromised in
61
Experience of care
retaining me as the only patient on a mental health section rather than one imposed
via the courts. I was visited by the consultant at the local therapeutic community and
invited for a community assessment.
I wasnt sure how to take this latest development. A therapeutic community had
been mentioned to me before and I thought this would involve groups of people having
crisis meetings to discuss how it made them feel when someone took their milk from
the fridge, for example. Again, I didnt think this was part of my life. I was a medical
student successful academically but there was no getting around the fact I wasnt
coping with living very well. It was unlikely that Id ever be able to go back to my studies, so I had lost my career, my home and my friends. Life had pretty much reached
rock bottom for me so it was time for me to accept any lifeline I was being thrown.
I went to the community meeting and it was clear that this group of about 25 residents were split on whether they wanted me to join them. Half felt I should be given a
chance and the other half were adamant that I would be bad for the group. I was
considered a big risk given my history of uncontrolled self-harm. Finally they came
down on my side and let me join them but on the condition that Id be out if I cut again.
The therapeutic community was the strangest, toughest, most homely place in
which I have ever lived. I was there for about 15 months, learning how to feel and live
again. It was as if I was given a second chance to do my growing up.
Its an incredibly challenging environment: if you mess up it affects other people
and they dont hold back from telling you. That is really tough. You can be struggling
and want to cut, but you have someone facing you in a group telling you how selfish
you are and how that would make them feel. Its the group dynamic that gets you
through in the end though. I learnt so much from the staff and residents in those 15
months and truly thank them for giving me back my life.
Part of the responsibility of living in a therapeutic community is to take on roles
related to the running of the community. This varied between preparing meals, chairing meetings, writing notes on individual group sessions and feeding back after someone has spoken of their individual struggles. I often found myself assuming or being
pushed into the role of spokesperson or advocate and the effect was to renew my feelings of self worth.
I arrived unsure of who I was and where I belonged but slowly, through the interaction with others, I was able to reassemble my understanding of me.
When I left the therapeutic community I was in a position to start putting my life
back together. It took a while as Id pretty much reached the bottom rung, but life is
good for me now. Im almost 15 years on and havent purposefully injured myself in
that time. Ive had a number of jobs, got myself a career, a PhD and some good
friends. Its taken me a long while to pick up from where I left off at 9 years old but
I think Im there now, happy, settled and coping again.
4.2.3
Personal account B
Experience of care
for some time, having been aware of borderline personality disorder from my previous work as a nursing assistant in child and adolescent mental health. However, I had
been struggling a long time before I realised the diagnosis was applicable to me.
Consequently, receiving the diagnosis wasnt a shock, and at that moment I found it
reassuring that I wasnt going to tip into a deep psychosis from which I would never
return. It also helped me start to piece together my understanding of how I had got to
that point why things had got so bad that the only place I could have any kind of
existence was a psychiatric hospital.
Looking back, my whole life had seemed to be heading to that point. As a child I
was hyperactive and was more interested in my environment and learning new things
than being held by my parents. I think my parents interpreted this as a rejection and
as being difficult. In addition, the family dynamics were difficult and incomprehensible to me as a child and I blamed myself for them. However, I lived well and was
lucky enough to be able to do most things that I wanted in terms of activities; my
parents gave me everything that they could. Despite this, home felt too unsafe and
volatile an environment to express my emotional and personal needs. Among my
sisters I felt the odd one out. I felt that I didnt belong in my family. My way of coping
with these feelings was to throw myself into school, where my joy of learning, music
and sport allowed me to immerse myself to the extent that my success at school somehow became a substitute for parenting.
What I didnt realise at the time, however, was that I still had a huge yearning to
be parented. I needed emotional connection, safety and understanding but didnt
recognise those needs nor knew how to get them met. As I grew older, I struggled
more and more socially because what I was missing meant that I did not acquire the
empathic understanding needed to manage social relationships. This yearning for
connection led me to seek refuge in any potential parenting figures that I came across.
Unfortunately, one person who took me under his wing was interested in me for the
wrong reasons I was sexually abused and raped as a child over a period of 6 months
to a year. This amplified my difficulties. I became even more socially isolated and
emotionally inept as I tried to shut out these experiences that I couldnt begin to
comprehend.
Not long after this I moved with my family to a different part of the country. At
first, this was a welcome change and a relief from abuse. People had no prior knowledge or judgements about me and this was welcome. I could be different from before
I could start again. However, this relief only lasted for about 6 months. Now as a
teenager, my difficulties and the emotions and memories I had temporarily locked
away began to resurface. My behaviour at school deteriorated, my moods became
unstable, I was withdrawn, I frequently sought out teachers for support but didnt
know why, Id leave lessons for no reason, Id have arguments with teachers, I began
to self-harm (hitting myself mainly), and became more preoccupied with the thought
of suicide.
When I was 14, I was referred to child and adolescent mental health outpatient
services where I began work with a clinical psychologist whom I saw weekly, sometimes twice weekly, for approximately 4 to 5 years. I was diagnosed with posttraumatic stress disorder.
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Experience of care
Having a psychologist meant that I finally had someone who could partly meet my
need for a parent (in that they could give me an emotional connection and understanding I so desperately needed). I undertook some important work around understanding
the abuse, but when she tried to initiate conversations about my family I couldnt say
anything. All I knew then was that I didnt feel safe at home. She described my family
life as being a ghost town.
During this time my thoughts of self-harm and suicide became more prominent,
but my drive towards destructiveness was most apparent in my relationships with
men. Not knowing how to deal with men after the abuse, the conflict between needing to be close to someone and being frightened of intimacy became increasingly
more difficult to handle as I was now at that age where male attention was inevitable.
I would find myself in difficult situations where I would end up having sex with
people I didnt want to as a result of fear and an inability to express my needs and say
no. After a while, I figured the only way to deal with this was to be the one in
control. Instead of waiting to be seduced I became the seducer, placing myself in a
number of risky situations.
Despite all this, I managed to get to university. Although I thrived in the freedom
that university allowed and in being away from my family, I was still extremely fragile in my sense of self and in my emotions. There was still a lot I had to deal with and
understand about my past, and this at times, especially combined with the pressure at
university, meant that I found it extremely difficult to cope. I accessed the university
counselling service on a number of occasions, but found that it didnt work at quite
the depth I needed. In the holidays, I occasionally had the opportunity to have a
number of sessions with my previous clinical psychologist. This support often
enabled me to be topped up just enough in order to survive another term. However,
the final year of my degree saw things start to disintegrate; the added pressure
combined with my limited resources meant that I had nothing left at times. My closest friendships broke down and I ended up taking two overdoses as I couldnt manage
the situation with my friends, the exams, and the thought of leaving university I
wasnt ready to be an adult.
Just prior to these overdoses I had been referred to a psychologist at university and
had been prescribed an antidepressant (paroxetine) by my GP. I struggled to work
with this psychologist as he took more of a behaviourist approach, which I didnt find
at all helpful. I also struggled with beginning a new therapeutic relationship after
having had such a positive therapeutic experience with my previous psychologist. I
eventually took myself off the antidepressant because I didnt feel that it was helping.
Somehow, I managed to complete my degree and returned to live with my parents.
As a result of my overdoses at university, my GP wished to refer me to adult mental
health services when I re-registered. This resulted in my referral to another clinical
psychologist who I met approximately biweekly. Things had settled since returning
from university, but my difficulties hadnt gone away they were just more in the
background. I still struggled a lot of the time, but I was able to keep this more private.
I began working as a classroom assistant in a school with children with special needs,
which I thoroughly enjoyed. I then started work in child and adolescent mental health.
This proved to be a mixed blessing.
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Experience of care
Therapeutically, the clinical psychologist and I had just started to unravel some of
my family dynamics and make sense of my experiences growing up. I began to understand that my Mum and I had both struggled with insecure attachments throughout
our lives and this helped me to understand some of the dysfunctional interactions I so
often repeated in my other relationships. The combination of attachment and psychodynamic understanding worked well for me. It captured so much of the unexplained
and helped me construct my life story, putting more solid foundations in place for a
sense of self to develop. Understanding my Mums difficulties and, in addition, my
Dads background (his Mum died when he was a teenager and he had had repeated
episodes of depression and anxiety) also helped me understand the volatile interactions that often occurred in our family and my parents capacity to be mildly physically and emotionally abusive at times.
However, doing this type of therapeutic work while working in child and adolescent
mental health proved to be a destructive combination. I thoroughly enjoyed the work and
felt that I was good at it. However, I was giving so much to the children I was working
with and at the same time was more open to my emotions as a result of the therapeutic
work I was undertaking. Everyday, I saw in the children how I was feeling inside being
acted out in front of me. This triggered so much that when I went home in the evening I
couldnt begin to recognise, name or understand the emotions I was feeling. Instead, all
I experienced was a huge vacuum. I was being sucked into something I didnt feel I could
survive. I literally felt that this feeling would kill me it was so huge and consuming.
The only way I could handle these feelings and to feel any sense of control was
through self-destruction, although more realistically I felt simultaneously out of
control and in control at the same time. The drive to self-destruct was so strong
that I felt I had no choice but to self-harm; but through the act I also found some
way of regaining some temporary stability, relief from that vacuum, and some
control. Previously, I had kept busy to keep this emotion at bay, but as time went
on and the therapeutic work continued I couldnt do enough to stop feeling the
emotions: overdosing, cutting, burning, blood-letting, balancing precariously on
the top of car parks and bridges hoping I could throw myself off them I tried
almost everything. By day I was going to work and pretty much managing, but in
the evenings and at weekends I was either being held at the police station detained
on a section 136 or in A&E. No one in the police station or in casualty could
understand that such a seemingly together person who had a good job could also
be so destructive and wasting their resources. I was leading a completely parallel
existence. Eventually, because I was so exhausted I started to struggle at work. I
took sick leave, never to return.
As soon as I gave up work, which was the only thing holding my life together, I
deteriorated rapidly. My self-destruction increased to two or three times a day, I didnt
sleep or eat, and my finances were in chaos. My whole life became a constant game
of Russian roulette. Although I struggled with suicidal thoughts, most of the time I
didnt actively want to die. I just wanted to feel safe and access help, but equally, if I
died by accident as a result of what I did, I didnt care either. Let fate decide.
Eventually, this led to a point where I was admitted to hospital and was diagnosed
with borderline personality disorder. I was an inpatient for 8 months. At first it was a
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Experience of care
difficult admission as my determination not to be medicated left the staff struggling
to meet my needs. I did, however, manage to build up relationships with some of the
more experienced staff. They helped me feel safer and they had the skills to work
psychotherapeutically with me. This I found more helpful than the interventions of
less inexperienced staff who tried to control me and my emotions by becoming more
authoritative. This tended to escalate situations.
The team was split between those who were more open minded about working
with people with borderline personality disorder and those who felt I shouldnt be
treated in hospital. This was difficult for me to deal with at times as it always came
across as a personal rejection. Eventually, as my ability to build relationships and to
learn to trust and ask for support increased, I gained more respect from the team as a
whole. This improved consistency in their approach, helped me feel that staff
responses were more predictable, and this in turn helped me to feel able to trust them
and ask for help, rather than self-destruct.
Throughout this time, as well as receiving support from the nursing team and
psychiatrist, the work with my clinical psychologist continued. I was able to make much
more progress in an environment where I felt safe. We continued to work primarily in
a psychodynamic/attachment orientated way, however, some inputs from cognitive
analytic approaches were very helpful in understanding the cycles and patterns of
behaviour in which I would get entangled and would lead to self-destruction.
Despite the progress I made during this lengthy admission, I didnt feel that I was
yet at a stage where I could survive at home again. I had a mortgage, which made
options such as supported housing feel too impossible, and I still didnt trust new
people enough to have care at home. A therapeutic community was therefore
suggested and after some consideration and a couple of meetings with the communitys outreach team, I decided that it was probably the best way forward and a step
that I now felt ready to make.
This transition was probably one of the hardest I have had to make: I was leaving
the safety of the hospital and was going to have to interact with peers and to survive
without parents in any form. However, the therapeutic community, although difficult,
proved to be the right move. Its combination of different treatment approaches, group
therapy and its emphasis on residents taking responsibility for running the place and for
each other, meant that I became more honest with myself and others about how I was
feeling, making it easier to identify my emotions and access the support I needed. It also
allowed me to do what I hadnt got around to in hospital linking my past story with
my current patterns of behaviour. I saw for the first time how much my current thinking, interpretation and behaviour replicated my past survival methods in the family, and
how these strategies I used as a child could no longer work as an adult. I recognised the
need to learn new skills and although it sounds a simple process, the reality was that it
was difficult and at times traumatic. I had to face up to the fact that, at times, I could be
selfish, blame others for things that were my fault, and shut others out. I had to learn to
accept all facets of myself and piece those functioning and malfunctioning parts of
myself back together so that I could start to build a sense of self.
Another important thing I learned at the therapeutic community was that I needed
to be my own parent and that I had the skills to do it. I had to look after myself in the
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Experience of care
way I wanted to be looked after. This would help me feel better about myself, increase
my sense of self-agency, which in turn would further strengthen my sense of self.
Perhaps most importantly, I learnt to interact socially. The therapeutic community
gave me an environment in which I could learn what was acceptable and unacceptable in terms of dependency, and through the process of seeing my behaviour
mirrored in the other residents, I realised the negative impact I could have on other
people. After a year, when I came to leave I felt like I was functioning better than I
had functioned in my entire life.
The difficulty for me was maintaining this once I had left the therapeutic community. Living a few hundred miles away I couldnt make use of the outreach services
that easily and I was too far from the friends I made there to have regular contact with
them. This meant that when I left I was socially isolated again, having not had much
of a social network prior to my admission into hospital. I was also living on my own
for the first time in 2 years, and dependent on the mental health services to fill the gap
the therapeutic community left behind.
I continued to work with the clinical psychologist and psychiatrist I had prior to
the therapeutic community, but in addition, I also had a community psychiatric nurse
(CPN). I found it difficult to work individually again after group work and I also
struggled with my relationship with the clinical psychologist. Having been dependent
on her before, I wanted to manage the relationship in a different way using what I had
learnt at the therapeutic community. However, we both found this a difficult change
and consequently we struggled to find the same engagement and level of work we had
achieved previously. In hindsight, this was probably one relationship I shouldnt have
gone back to, but we both found it difficult to end the relationship and we got stuck
in an unhelpful dynamic for a while.
The therapeutic work, at this point, came mainly from my psychiatrist, who prior
to the therapeutic community was too advanced for me to engage with for any more
than just a general overview of my care. However, my improved ability to articulate
my feelings meant that I could now engage with him therapeutically. In my community psychiatric nurse, I had a more general support that was whatever I needed it to
be. This ranged from the practical and the therapeutic to the social (as much as it
could be within the boundaries of the therapist-client relationship). This flexibility
was hugely helpful, especially combined with the consistency and continuity in my
care I had received before and after the therapeutic community.
Unfortunately, the lack of any social network and the loss of confidence caused by
my disintegration and lengthy hospital admission meant that I struggled to build on
the progress of the therapeutic community. Although I was managing more than I
wasnt managing, I began to self-harm again, having previously resisted this urge at
the therapeutic community. My CMHT helped me to keep this to a minimum by
increasing visits at times of need when I asked for help and through short hospital
admissions (2 to 3 days) where I could have some respite and feel safe. Also crucial
in helping to keep self-harm to a minimum was the social services out-of-hours team.
Although I had used this service before the therapeutic community, the calls would
often escalate crises as I struggled to accept that at that time they couldnt meet
my needs. However, now that I could articulate myself better and wished to use
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Experience of care
alternative methods to cope, I established good relationships with most of the team.
The out-of-hours team were happy to engage in supportive conversations as long as
they had time, and if they didnt they would explain that to me so that I wouldnt feel
personally rejected and agree to ring me back when they had more time. This worked
really well for me, as my most difficult times were at night and their consistent and
predictable responses were helpful in settling me ready to sleep (with the aid of
promethazine at times). This non-judgemental response allowed me to engage enough
to articulate what I was feeling and to move away from the feelings (often onto
mundane topics for a short while) until I felt calm enough to manage the rest of the
night. Knowing that this service was there and that there was always an option to ring
back made it such a huge part of my progress after leaving the therapeutic community.
All of this helped me to maintain a much higher level of functioning. However,
my lack of confidence prevented me from making much progress in the other areas
of my life. I was still a full-time patient and I struggled to believe that this would ever
be different. Since the therapeutic community I had found the label of borderline
personality disorder a hindrance. It made me feel like a second class citizen, like I
could never be normal. I struggled not to believe the myth that it was untreatable and
felt that no one would want to employ me.
Despite the progress I had made, I couldnt live with the thought that my life
would always be limited. I sank into a depression, and this combined with the unfortunate timing of another rape, a destructive relationship as a way of coping with the
rape, a pregnancy as a result of the destructive relationship and subsequent termination, and the retirement of my psychiatrist all in the space of about 8 months
destabilised me so much that I ended up being hospitalised involuntarily under
Section 2 of the Mental Health Act.
Although, at the time, this appeared to be a huge setback, this admission changed
a lot for me. I was prescribed an antidepressant (mirtazapine) for a few months which
I found really helped to lift my mood. However, towards the end of the admission when
my mood had improved, I also realised that I had to make a choice to live my life,
reject the labels myths and decide for myself my limitations, or to believe the myths
and accept that I would be a patient for the rest of my life. The latter was not an option
to me, so after I came off the section I decided that I needed to face my fears and start
to rebuild my life. I decided to enrol at university to undertake a degree in psychology.
This proved to be a successful move, and one that gave me a good balance between
commitment and space for me to manage myself and the transition I needed to take me
from being a patient back to a being a functioning member of society. It also allowed
me to gain confidence in an environment that didnt ask too much of me most of the
time. It enabled me to get to a point where I had a social network, an identity other
than patient and feel able to leave behind my last connections with the service, my
community psychiatric nurse, and the social services out-of-hours team.
I did it I am no longer a patient. I completed my degree, and am managing to
work full-time. I no longer consider myself to have a diagnosis of borderline personality disorder. I have none of the symptoms and when I look around at other people I
dont seem to be any different from anyone else. The only time I feel different is when
I recognise that my journey to this point in my life has been a lot more complicated
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Experience of care
than many people I come into contact with. However, when I look around I also see
myself handling situations more competently than many other people. I have gained
in strength and resilience as a result of my experience of handling such intense
emotions, which means that I am not easily overwhelmed by lifes challenges. Im not
perfect though. I still have bad days, but talking to friends, so do most people. I really
am no different. I no longer have thoughts of self-harm. My moods are more recognisable as normal, and my sense of self is much stronger and doesnt fragment
anymore. In addition, I am more open, and able to recognise, contain and talk about
my emotions. I can also manage friendships and intimate relationships. The only
thing that is remotely borderline personality disordered about me now is that I can
still remember how it felt to be that way but it is just a memory.
4.2.4
Personal account C
Experience of care
I was told that I was adopted very early on and have no memory of ever thinking
that my adoptive parents were my real parents. As far back as I can remember I used
to pray that my real Mum would rescue me. When someone came to the front door I
used to rush towards it shouting Is that my Mum? Has she come to get me? My Nan
remembers me asking women in the supermarket the same questions. I also pleaded
with any women teachers from infant school upwards if they would adopt me.
I was a very disruptive, naughty child who wanted so desperately to be loved and
accepted by my adoptive family. I had behavioural problems and used to rock backwards and forwards going into a trance-like state for hours everyday. I had terrible
insomnia from early on and would repeatedly bang my head on the pillow and make
a droning noise to distract myself from the unbearable agitation that I felt. This behaviour ignited a cycle of physical and emotional abuse at the hands of my adoptive
parents who did not understand the mental distress I had to endure on a daily basis.
My father, exasperated that he couldnt sleep because of my head banging, used to
come into my bedroom and punch me until I stopped. I used to have dreams where
the devil would tell me to go into my parents bedroom and smash my Mums and
Dads heads in with a hammer.
My father was a rigid disciplinarian and I quickly became the black sheep of the
family the source of all the familys woes and misery was my fault. I spoilt everything. I was to blame for everything. They went on family days out and I was
excluded for being naughty, locked out of the family home, and left sitting in the back
garden on my own for hours on end until they returned, happy that they had had a fun
day out without me around to spoil it for them. I used to deliberately say all my
Christmas presents were a load of shit to annoy them and ceremoniously smash them
all up on Christmas day in utter defiance then eat as much chocolate I could until I
threw up. I often spent Christmas day banished to my room.
I was a habitual liar at school telling my friends that I went on amazing holidays
and had all these amazing toys (when the exact opposite was true). My father often
withheld presents and instead gave them to my brother and sister to punish me. To
punish me further he refused to fund school trips and would ration the sweets my
Mum bought me in an attempt to control my behaviour.
I started to dress in increasingly attention-seeking clothes. I used to bite my nails
down so far they would bleed and were very painful and as a punishment I was told
my pocket money had been stopped for 5 years.
One time after I refused to rake the back garden my father beat me with the rake.
I ran into the kitchen hoping my Mum would protect me but she grabbed me so that
my Dad could beat me some more. I grabbed a carving knife and tried to stab her so
shed let me go. I was beaten severely for this and after that they contacted social
services requesting I be put in a home for maladjusted children. I was 12 years old.
Social services tried to work with the family to overcome our problems but my
parents refused to attend the therapy sessions and I had to go on my own. When the
decision was made not to send me away my father was so angry he just used to act as
if I didnt exist. The rest of the family tried their hardest to get on with their lives but
the silent aggression from both sides made me run away and spend hours on my own
in the woods reading my comics. It was during this time that I started to feel suicidal
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Experience of care
and constantly tell my Mum and Dad that I wanted to die to which I was told that I
had growing pains.
I hated my Mum and Dad and wished they where both dead and constantly spat
on their food and urinated in their drinks if I could get away with it. I used to bully
my younger brother because he was their flesh and blood and mercilessly beat and
threatened both my brother and sister until they cried and begged me to stop. I started
to set fire to things and torture insects. I prayed to the devil that people I hated at
school would be killed in horrific accidents and I used to steal from my parents and
smash my brothers and sisters toys to punish them. I remember watching the film
The Omen and thinking that I was the Antichrist.
I was very disruptive at school and repeatedly got the cane for verbal attacks, such
as calling the headmaster a cunt to his face in assembly. Even at junior school when
I was 10, my father told me to tell my teacher she was a stupid bitch, which I did
and got into a lot of trouble.
By 14 I had started sniffing glue to escape the misery I felt and also experimenting with cross-dressing. I was often sent home from school for wearing womens
clothing. I started to alienate the few friends I had by doing this but I thought I was
the messiah and they would all worship me one day.
My father hated my emerging transvestism and smashed my make-up box to
pieces and forbade me from wearing any womens clothing around the house. The
threat of being thrown out onto the street was made constantly. I went on hunger
strike and stopped swallowing my food. I used to store all the rotting mouthfuls of
half-digested food in shopping bags in my wardrobe.
I left school in 1983, failed to get into college and was on the dole for 3 years.
During this time my eating disorder worsened and I developed severe acne. I drifted
through the 1980s in a haze of solvent abuse and, due to my terror of women, found
some relief in pretending to be homosexual.
The slow decline into hell that started in my childhood gathered pace during my
twenties. I had one serious relationship with a girl but it was stormy and complex. I
used to feel nausea after sex and constantly behaved like a homosexual and lied about
my sexuality to her. In relationships I have an intense need for constant reassurance;
and when I try to hold back I get unbearable feelings of panic and fear of imminent
abandonment. I also find it very difficult to trust people.
I went through a particularly intense stage of religiosity in 1988 when I became a
Jehovahs Witness but I very quickly started to feel disconnected from everyone in the
congregation and habitually fantasised about murdering and torturing them.
When my relationship ended I stated to drink heavily and self-mutilate, which led
to my first contact with mental health services in 1990 at the age of 23. I saw my GP
first, who referred me to a consultant psychiatrist. After three lengthy assessments I
was told I had symptoms of a classic disorder, but that it could not be treated with
medication. I was formally discharged from services never knowing what the disorder was. Because of this I believed that the psychiatrist thought I was making it up.
My parents, who were divorced by this time, had the sense that because I had been
discharged there mustnt be anything that wrong with me. My parents and friends also
thought I was making it up. I was left thinking that my problems were not real even
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Experience of care
though I constantly felt suicidal and my behaviour by that time was very extreme.
People thought I had mild depression or was just an attention seeker. I was put on an
antidepressant by my GP. But my depression, drinking and self-harm worsened and I
constantly spoke of suicide. After I did try to commit suicide in 1991, I was given ten
or 12 1-hour sessions of CAT. This made no difference whatsoever and I continued to
deteriorate. In 1993 after another suicide attempt I had 20 sessions of CBT but this
also did nothing to help me.
In the early 1990s I was reunited with my real parents. This was not without problems. After I was told that my mother attempted to have me aborted I started to
despise her and fantasise about murdering and torturing my real parents as well. I
particularly hated my real sister.
I endeavoured to try and reconnect with them in 1997 after I was made homeless
and had been living in a drug psychosis unit for 13 months because there was
nowhere else to put me. I didnt have psychosis and often wondered why I was
allowed to stay there. It was during that time that a junior staff member broke her
professional boundaries and told me I had borderline personality disorder. I misunderstood what she had said and thought it meant I was on the borderline of having a
personality disorder, and therefore was not that serious (even though I felt suicidal
all the time).
After this I was housed in an old peoples block on my own and rapidly spiralled
out of control. I used to over-medicate with all the drugs I was taking: I would take a
cocktail of SSRIs, sleeping tablets and alcohol that would make me go into a trance.
I used to do this on a daily basis and just lie in bed all day in a haze rarely getting
dressed or leaving the flat. I couldnt look after myself and lived off the same meal
everyday: cornflakes, saveloy and chips.
My flat was undecorated and I slept on a mattress on the floor. I was obsessed with
perfection and spent hours redoing the same small DIY jobs over and over again
compelled by a vision of my dream home. In reality I was living in an uncarpeted,
unfurnished flat with no furniture and which was covered in plaster dust from my
endless attempts to make all the walls perfectly flat and smooth.
In the late 1990s I had a few therapy sessions for body dysmorphic disorder, but
the therapist seemed very under-trained. She was a nice person and seemed to care,
but she said that everyone has a personality disorder. She used to give me photocopies
from books to read which were of no benefit whatsoever.
The thing that finally had an impact on my symptoms was attending a therapeutic
community from 20052006. It enabled me to make some progress, to understand
myself, understand boundaries, and to see the effect my behaviour had on others (a
massive deterrent). I was able to start loving myself and to have respect for myself
and others. It also allowed me to break my dependency on my real mother, to gain
insight into my cognitive distortions, to learn how to make and keep friends, how to
manage destructive impulses and to ask for help. I had not realised that the label
personality disorder was so stigmatising until I went to the therapeutic community
and met other sufferers. However, even with a year in intensive therapy at the therapeutic community I still have only improved in some areas and will need ongoing
support and help and further treatments.
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Experience of care
After I left the therapeutic community, my consultant psychiatrist was advised
that I should remain on an enhanced care programme approach, but he ignored this
advice and withdrew my access to a CPN and the self-harm team. In my first outpatients appointment after leaving the therapeutic community he angrily raised his
voice and told me there was no scientific evidence to show that you will ever improve.
Borderline personality disorder has had a serious impact on my life. I cant
concentrate for very long and I get confused by what people mean. My obsessions
about perfection get in the way of doing almost anything practical and I cant
complete tasks. Although I crave perfect order I live in total chaos, with rubbish,
clothes, crockery and magazines strewn all over the place. I live in absolute squalor
and never have any motivation to tidy up because attaining perfection is so stressful I
dont even want to try. I am unable to make plans and keep to them and I find it almost
impossible to make decisions. I get bored and agitated very easily and thoughts go
round and round in circles in my head. To most people boredom is endurable, but
when youve got borderline personality disorder boredom is a killer. Youre too
unmotivated and hate yourself so much that you dont want to do anything, go anywhere or see anyone. Boredom will make you self-harm and start that fever pitch
agony of wanting to commit suicide. I have hair trigger explosions of intense feelings.
Sometimes I feel so excited about doing something its as if I could conquer the world
then a couple of hours later it just seems like a load of bollocks. I cant decide what
I want to do with my life. I find it difficult to work unsupervised and I have started
college courses but then I get angry with the other students and end up hating everyone, giving up and lying in bed all day for weeks on end.
It has also seriously impacted on my relationships and I find it very difficult to
make friends. I feel angry that people dont understand me and in turn people are
frightened by my rages. I am terrified of engaging in conversation people Ive not met
before because I am worried they will think Im boring. I love people one minute and
then hate them and want to hurt them the next. Likewise, I can fall in love with someone almost instantaneously then be repulsed by them in a matter of hours. I can be
abusive then feel terrible remorse and fear being abandoned. I have sexual feelings
but cant have sex; this drives me insane as the hunger never goes.
My condition has changed since leaving the therapeutic community but not as
much as Id hoped. Some of the feelings are not as extreme as they were before I went
there but because I refuse medication some are even worse. Im learning how to deal
with them better but I still relapse and battle with suicidal and violent feelings, and
my obsessions around perfectionism are still really bad. I still self-harm but realise it
is futile and I am alcohol dependent; if Id got some help when I left the therapeutic
community I would not have started self-harming or drinking again. I also have problems cooking and looking after myself. However there are some days when I like who
I am more than ever and I feel happier than I ever have done in my entire life. I am also
in a relationship, which although is a bit unhealthy at times, is not as co-dependent as
in the past, and I have made improvements to make it work.
In order to try and stay well I reassure myself and assume that things will be positive. I relax more and meditate on what I want and not on what I dont want. I have a
gratitude list of all the good things in my life that I read when I feel bad. To help with
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Experience of care
my self-esteem I try to take a pride in my appearance. I attend Alcoholics Anonymous,
which is helpful although I find the interactions with other alcoholics can be problematic at times. I try to be more boundaried with my emotions and read as much as I
can about personal growth and recovery to give me hope. I keep myself busy and
avoid people and situations that wind me up. I also try to have contact with other
people recovering from borderline personality disorder at least once a month.
4.2.5
Personal account D
I dont know when I was first diagnosed with borderline personality disorder, but the
first time I knew about it was when I read it on a report, about 5 years after I had been
initially referred to psychiatric services. I was totally horrified and ashamed. I thought
I was one of the untouchables, one of those patients I had heard described as untreatable and extremely manipulative by health professionals whom I regarded as highly
competent. I fell into deep shock and crisis for some time after.
When I was a young child I was over-sensitive and needy, constantly acting out
for attention. Unfortunately both my parents were ill-equipped for parenthood: my
father was an alcoholic and my mother had her own mental health problems and never
even wanted children. Early on I became the runt of the litter, constantly bullied and
shamed, so I learnt to trust no one and keep to myself. This was an impossible task
for someone with my personality.
At age 32 after having been severely bulimic for many years, and still not having
managed to kill myself, I sought psychiatric help. This was initially an eating disorders unit. The staff there were very kind, but I always felt that they didnt know what
to do with me. I felt like I was disintegrating.
I had two stays in the eating disorders unit with the second being followed by 5
months in a drug and alcohol rehabilitation unit, all of which helped regulate my
behaviours. But without my usual coping strategies (alcohol, drugs, food and cutting)
I had no way of surviving what felt like such a cruel and dangerous world. So despite
doing everything I had been taught for a while, and despite all my determination to
be well, I eventually succumbed to my old ways of coping. As all my treatment had
been aimed at stopping them, I fell back into the bottomless pit of shame and disgust,
only to then be forced back into hospital or a crisis unit for a short respite. My stays
in both the hospital and the crisis unit were invaluable at those times of crisis, because
they were time-limited and managed appropriately. As I had a strong need to be
looked after and be rescued from myself, it was essential for me that it was like this.
But despite weekly psychotherapy, and regular appointments with several different health professionals, none of it was getting to the root of the problem and my
admissions were becoming more frequent. So eventually I was admitted to a specialist day unit for borderline personality disorder. Here for the first time I was not looked
at as a set of behaviours and stuck in an appropriate box. Instead I was seen as an individual with my own problems that staff wanted to learn about and help me with.
Finally I felt listened to and understood as people could see me as a whole set of
problems rather than looking at the individual bits of me. During my time at the unit
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Experience of care
I learnt that I use what others see as unhealthy coping strategies; to some extent they
work for me and they are what I have known for almost 30 years. There are times
where I do fall back on them because life can feel just too painful and frightening
without them. I use them as my armour to protect me from the outside world. So my
goal changed from giving up all these behaviours to minimising them instead and not
to shame and humiliate myself when I once again fell back on them.
My relationship with my psychiatrist is very good and I trust him implicitly as he
has always tried to understand, and has always been totally reliable and consistent.
I also know I can contact him between appointments if I am not able to cope and he
will try to see me. This gives me a lot of strength and so reduces the need to contact
him as a result.
I have also been one of the lucky few who was in the first instant referred to my
local hospital, which has very good specialist services such as dual diagnosis, an
eating disorders unit, a crisis unit and specialist psychotherapy services for borderline
personality disorder. But I was plagued by long waiting lists and being passed from
one health professional to another until I was given the right treatment.
I have always tried to find support groups to help myself as much as possible and
help me through the gaps in between appointments. I have found these invaluable and
very supportive, even though I felt there was a big gap between other peoples problems and my own.
Borderline personality disorder affects my entire life, from the minute I get up to
the minute I go to bed, although to a much lesser degree than it used to. But all day I
have the misery of sitting in my flat by myself everyday because the fear of being
with people is still greater than the fear of being alone; the sleepless nights and tired
days, so that I can only work a few hours before feeling exhausted; the continual
racing mind and appalling concentration, which makes conversations hard to follow;
and feeling battered and hurt constantly by people due to my over-sensitivity. But on
the worst days Im learning that the safest and kindest thing I can do for myself is to
climb back into bed for the day until the suicidal thoughts abate.
Im learning to live life, which is often filled with pain, fear and mental torture,
but Im also learning that some days are better than others. Im learning to accept my
fragilities: that there are many everyday things that feel impossible to me, as well as
many things that I do to myself in the secrecy of my flat that others would be totally
appalled by. It all seems manageable so long as I dont compare myself and my mess
of a life with others.
With no close friends or family and only razor blades, food and alcohol as my
allies, I guess borderline personality disorder continues to be my only close friend.
4.2.6
Personal account E
I am the biological mother and carer of my son, who has borderline personality disorder. He was adopted and when we met in 1991, when he was 24, it was obvious he
had some kind of mental health problem. In 1990 he was referred by his GP to a
consultant psychiatrist at his local community mental health service. Suffering with
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Experience of care
obsessive behaviours, social phobias and eating problems, the final straw came when
making an item of clothing and he had totally lost control. After several weeks of
assessment he was told he had symptoms of an unnamed classic disorder that could
not be treated with medication; the consultant told him there was nothing more he
could do for him and discharged him from his care.
Once I got to know my son he eventually told me about his obsessions concerning his body and clothes, his aggressive thoughts, and his drinking and self-harming.
He told me that when a relationship with a girlfriend had ended he made massive cuts
with a razor on his chest and arms and put bleach in them. He covered up his initial
self-harming episodes and he was left with hideous scars. He also told me about his
physically abusive childhood and lack of emotional bonding with his adoptive
parents.
I was beside myself with grief, appalled that nobody seemed to care enough to
help or listen to my sons very distressing story. He went back to his GP who gave
him antidepressants and arranged a course with a local counsellor. Looking back now
this seems to me to be wilful neglect as he fell deeper into an abyss of misery.
This was all new to me but at that time I felt sure that with my support and further
help there would be a light at the end of the tunnel. However, I watched him deteriorate even further over the next 5 years with no real support or constructive treatment
from his CMHT. His adoptive mother couldnt cope with him and in 1994 when she
decided to sell the family home she told him to leave. This threw him into total chaos
and bouts of extreme anxiety and excessive anger, which he turned in on himself. At
this time he seemed to draw away from me and for about a year had only spasmodic
contact. He seemed to find some solace in the fact he was given a social worker who
seemed to be trying to sort out his life for him while finding a place for him in a hostel.
The hostel was for people with schizophrenia and those with drug psychosis. He
received no treatment and had only spasmodic visits with a consultant psychiatrist
when in crisis. I felt totally helpless for the next 2 years as I watched an extremely
intelligent and articulate young man with real creative talent living a distressing life,
cleaning toilets to earn money, having no social life, taking antidepressants, drinking
to excess, self-harming and attempting suicide by taking an overdose and slashing
himself severely.
During this time my son learnt from a female member of staff at the hostel that he
had borderline personality disorder. This was a lapse on her part and totally unprofessional, but at least we now knew. We mistakenly assumed it meant that he was only
on the borderline of something, not having a full disorder, so we didnt really see it
as that serious. Nobody told us any different and we were left floundering in the dark.
I could not bear to see my son suffering at the hands of his local CMHT any longer
so in 1996 I asked him to stay with me temporarily and offered him some work in my
office, which was a creative environment, just doing simple tasks that would keep him
occupied. His care was transferred to our local CMHT under the care of a consultant
psychiatrist. I remember thinking that at last, with a new mental health team, we had
hope, we would be able to access better treatment and perhaps begin to understand
what was really the problem. With my love, care and support and real treatment I
thought I would see my son at last living a life he really deserved.
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Experience of care
What followed then was the most traumatic 10 years of my life. The glimmer of
hope we had at the outset was soon to be extinguished. The local trust was worse than
my sons previous area. The people who had been entrusted with his care treated him
with neglect and total disregard for his feelings yet again.
My son has been given so many diagnoses: in addition to borderline personality
disorder he has been told he is body dysmorphic, schizotypal, schizoaffective and
obsessive-compulsive. Sometimes when I asked the consultant for more information
he denied he had even given that diagnosis he changed it so many times he couldnt
remember what he had said. The consultant never explained anything in great detail,
all he seemed to do was prescribe medication and tell us both to be patient. He told
us that the local trust was running with restricted budgets and staff and that there were
no trained therapists because of maternity leave. He took months to follow things up
and lost important letters. I complained there was no CPN but the consultant said
there was no need for one. My son was never taken seriously and was told on numerous occasions when expressing his feelings of suicide that he didnt feel suicidal and
should stop saying it. His anger grew and grew.
My son also met with no understanding from others, such as nurses who
attempted to stitch his cuts with no anaesthetic. He was handled roughly, without any
sympathy or care, and with an attitude of Oh well, you did this to yourself. Usually
when he was discharged we would go home with him caked in dried blood because
nobody had bothered to clean him up. On more than one occasion I came home to see
a noose hanging from the banisters and blood everywhere.
I also complained that my sons social worker was hardly ever available, especially in a crisis. She curtailed and cancelled appointments and gave him misinformation about housing. On one occasion when I was stressed and just couldnt take
anymore I took my son to the CMHT and wanted to leave him there. All the staff did
was leave us both in a room and kept telling me there was nothing they could do, our
consultant wasnt available and to go home. In the end when I had calmed down I did
go home, feeling totally defeated and completely alone.
Around 1998 it seemed that body dysmorphic disorder was the main diagnosis.
A friend of my son heard of a specialist in her area and found out we could see him
privately. After seeing my son the specialist agreed that his condition was extremely
severe and needed lengthy inpatient treatment. He did not agree with the drugs
regime he had been given a cocktail of antipsychotics, mood stabilisers and antidepressants. However, it was a private clinic, and while they had some funding
arrangements for some NHS trusts, this did not include ours. We would have to fight
for a place and fight I did. We were told by our trust that it was procedure to apply
to a hospital that the trust had connections with; if they denied him access to their
programme then he would automatically get funding for the private clinic. This
process took over 2 years, with much prompting and demands from me. After waiting a very long time for an appointment at the hospital and being told that they could
not give him the 24-hour support he would need, they said that the private clinic
would be the best place for him. I felt so relieved that at last he would get treatment
from somebody who really understood him. But soon our hopes were dashed again.
The hospital changed their criteria there was inpatient treatment available after all.
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Experience of care
My son was in total despair about this, which led to more self-harming and further
suicide attempts.
During this period my son lived in total chaos even though I tried on a daily basis
to help him cook and tidy his room and to learn coping strategies. One time I came
home to find the house had been totally trashed, windows broken, furniture thrown
outside, and armed police at the property asking if I wanted to press charges. The
house was full of blood. He was sent home the following morning and there was no
visit to assess if he was a danger to himself or me. With all this aggression it was obvious that the inability to be heard was growing and growing, but nobody was listening.
Because of the above episode my son was sent to see a forensic psychiatrist. She
assessed him and wrote a report. We were not allowed to read this at the time,
although when we subsequently made an official complaint we did see the notes. In
this report the consultant said that my son was a danger to me and that it was in his
best interest not to live with me. And yet they allowed us to live together for a good
many years after this episode. He was becoming more and more dependant on me and
would have anxiety attacks if I were ill or had to travel any distance in my car. He was
afraid that I would not return or die.
On another occasion when I had gone to bed, he tried to kill himself with exhaust
fumes from my car. Luckily the car was parked on a public road and someone banged
on the window. He came staggering into my bedroom and dropped unconscious to the
floor. As I waited for the ambulance, I held him in my arms and remember thinking
that he was going to die. The ambulance staff were very supportive and caring but at
the hospital it was seen as just another suicide attempt, and he received no sympathy.
I just had to keep going, keep working, and keep looking after my son. I was the
only one who seemed to care. I wanted to scream from the rooftops, SOMEBODY
HELP US PLEASE. But I was also beginning to resent having my son living with
me. I began to see my son as the disorder and forgot that it was an illness, but his
behaviour around the house and in my office was becoming intolerable. I was totally
overwhelmed by the enormity of it all I was trying to run my own business, pay all
the bills and single-handedly (I had separated from my husband) cope with my sons
mood swings, self-harm and aggression. I begged his social worker to find somewhere for him to live apart from me and she told us she had found him a place at a
shared housing scheme. He was shown a room and felt quite happy about it, but then
we were told they could not accept him because he had borderline personality disorder. One would have thought that a social worker, working in this area with vulnerable people, would know this. So yet again his hopes were raised and then dashed.
By this point, as the social worker knew, my relationship with my son was very
strained. We began to argue all the time, and I went from being an outgoing and fun
person to someone who didnt sleep, was very tearful and extremely stressed. Like my
son, I felt I was going down the same path of wanting to give up I wanted to climb
into bed and never wake up. I was assessed for carer support, but I didnt need money
I NEEDED TREATMENT FOR MY SON. If someone had taken us seriously I feel
we would never have been allowed to get into this awful situation. In the end I saw a
counsellor whom I found and paid out of my own money. In all these years I have
had no support whatsoever. I was not told how to deal with personality disorder;
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Experience of care
all I have gleaned is through books that I have found by searching on the web and
purchasing myself.
Finally in 2004 after several failed attempts of gaining appropriate treatment
which included brief and ineffective sessions of CBT with poorly trained therapists
whose expertise extended no further than a cup of tea and a chat and giving him
photocopies from books to read and continued episodes of self-harm and overdose,
his consultant psychiatrist, who had expressed his own frustration that my son wasnt
making progress despite the fact he had never been offered any significant inpatient
treatment, informed us in a very offhand way that there may be somewhere that can
help you, we have just sent someone here, just dont know what else to try, this is the
last thing.
This last thing turned out to be a therapeutic community run on democratic lines
for people with severe personality disorder. After several agonising months of waiting my son was accepted in the summer of 2005 for the year-long programme.
We have found out since that the CMHT had in fact been sending patients there for
a number of years and that it did not cost them a penny. This infuriated us because my
son was told he could not access treatment due to local PCT funding issues. I feel that
the consultant wasted a good 10 years of my sons life through ineptitude and prejudice.
The therapeutic community helped my son to gain a sense of who he is and work
through the pain of the abuse he suffered as a child. This was something he was never
allowed to express in all the previous years because his consultant psychiatrist said it
wasnt good to go over the past. It was a very challenging regime but it is a testimony
of his will to succeed that he got through the year at the therapeutic community. I am
very proud of him. My sons stay there changed his life for the better and immediately after his release he was extremely hopeful. For the first time since I had known
him, I could hear his enthusiasm and optimism for life loud and clear. He was confident, had self-esteem and made plans for the future, registering at our local college
for a course, working towards some qualifications in art therapy. I was so delighted
and relieved that at last, at the age of 40, he could begin to lead a better life.
In that year I also went into therapy, which I continue to this day and have funded
by myself, to try and unravel what had gone on in those past years, to come to terms
with my sons adoption, his abuse by his adoptive parents and our relationship. I
slowly began to get my life back, and to understand what my sons diagnosis actually
means. I have read and researched so much and I have made new friends and been
happier than I have been in years. Above all I have learnt to make boundaries, which
I have tried hard to stick to since my sons discharge. This has led to my son having
a lot of ill feeling towards me, which I find very distressing. However in therapy I am
learning to deal with this. I can only hope in time he will come to see that the decisions I made about him living and working independently from me will serve him
better in the long run.
So finally there seemed to be a light at the end of the tunnel, but we were proved
wrong.
The therapeutic community offered outreach support, a weekly meeting held in
London for 6 months, and they also put together a care package of support to help my
son through the initial release period and help him sustain the massive gains he had
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Experience of care
made. They liaised with our local CMHT and consultant psychiatrist, and his CPN
(whom my son had not met before) attended two CPA [care programme approach]
meetings to make sure everything was in place prior to his discharge and ready for his
aftercare. They advised his consultant that he should remain on an enhanced CPA to
help him through the initial period post-discharge. But in their ignorance they denied
him this, withdrew the CPN in the first week after he left the therapeutic community,
and said that my son had made improvements and lowered his CPA level. He was not
given a key worker or social worker. He was denied access to an emergency phone
support network and told to make an appointment to see his GP if he felt suicidal. We
tried to complain and saw our local MP in the hope that his intervention would effect
a turn around. The staff at the therapeutic community requested a meeting with the
CMHT to try to persuade them to reconsider their disastrous decision to ignore their
recommendations. This was immediately refused and the week that my son was
discharged the CMHT told him they no longer wanted him on their books. They said
that because of his improvements they had nothing more to offer. The consultant even
challenged the legitimacy of personality disorder as a real diagnosis telling my son he
had to look after people with real mental illnesses and that there was no clinical
evidence that he would ever fully recover. My son requested another consultant, but
this person said the same kinds of things.
Since then my son has floundered. He has started to drink and self-harm again and
last summer took a very serious overdose. He gave up college because his diagnosis
leaked out and certain members of staff started to treat him differently. He fought
extremely hard against all the odds to keep going without medication and with the
support of the friends he made at the hospital.
Then we found out that at the time he was discharged from the therapeutic
community the PCT had set up a personality disorder community support project
about 10 minutes walk from my sons flat. The CMHT had failed to mention this
even though in a meeting with the therapeutic community they were asked if any such
services were available in the area, as the therapeutic community was aware that at
that time PCTs where being given funding to set them up in most areas. To date my
son has not been offered a place there. At one time he paid to see a therapist for
weekly sessions at a local counselling centre; when he told them of his diagnosis the
therapist terminated the therapy.
I was trying to keep to my boundaries of supporting him to live independently but
the fact that he was receiving no support from the local CMHT only made me feel
compelled to help. This was driving him back to me, something he didnt want, but
there was nobody else. All the professionals have advised us about us keeping healthy
boundaries, which we have tried to do, but its extremely difficult for my son who has
no network of support. He has the friends he made in the therapeutic community, but
sometimes this only adds to his anger and feelings of neglect because they live in
areas that offer far more support. If he had received help and support from the appropriate channels I feel our relationship would now be stronger. However, its falling
apart because he feels I neglected him when he needed me.
Recently he has been offered 12 weeks of therapy by the head of the psychology
department of our local trust. We believe this is a result of our official complaint that
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Experience of care
is still ongoing. He also applied for an art foundation course at the same college but
was rejected. He was told that with his diagnosis he would not cope. He ended up
doing a pre-foundation course, which is so elementary that he is unstimulated by it.
His tutors could see he wasnt being stretched and his talents far exceeded the basic
lessons.
It seems that whichever way he turns he is blocked by prejudice and outmoded
beliefs. At this present time feelings of hopelessness permeate his waking hours and
his extreme anger has returned. With two recent suicide attempts I have to face the
fact that one day he may take his life. This would be such a tragedy for such a loving,
caring man who is torn apart and struggling without help and understanding. He
wants to stand on his own two feet and is not allowed to. He was so close to having
a real life and through wilful neglect he is sliding back to how he was before.
Only through public awareness and the education of professionals in all areas will
people suffering from this disorder get the real help and support they need. The biggest
issues for both my son and me is being heard, understood, and having ones feelings
validated. I also believe that it is valuable for professionals to hear the carers views on
the disorder. With help, education and support, carers could be an even greater asset
than they already are and be properly recognised for the support that they give.
My son has a long way to go and sadly has slipped back for now, but he has made
big strides forward since his stay in the therapeutic community and he has the confidence to fight for his right to appropriate care and support.
4.3
4.3.1
Introduction
4.3.2
Evidence search
In order to draw on as wide an evidence base as possible the GDG asked the clinical
question: what is the experience of people with borderline personality disorder of care
in different settings?
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Experience of care
The most appropriate research design to answer this is descriptive material
collected from the first-hand experiences of service users, either from one-to-one or
group interviews or focus groups, or from surveys. This kind of material can either be
presented in a fairly raw state or it can be subjected to analysis using a theoretically
driven qualitative methodology, such as grounded theory or discourse analysis.
In order to source such material, a search for published studies was undertaken
which was supplemented by a search of the grey literature. The electronic databases
searched are given in Table 4. Details of the search strings used are in appendix 7.
Ten studies were found that contained material relevant to the clinical question
(see Table 5).
4.3.3
Date searched
Update searches
Study design
Patient population
Outcomes
None specified
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Experience of care
Table 5: Studies of service user views of services
Study
Diagnosis
Research design
Crawford et al.,
2007
Cunningham et al., 14
2004
Borderline
Semi-structured interviews
personality disorder
Haigh, 2002
14
Hodgetts et al.,
2007
Borderline
Semi-structured interviews
personality disorder
Borderline
Summary of views
personality disorder gathered during
semi-structured interviews
Hummelen et al.,
2007
Borderline
Semi-structured interviews
personality disorder
15
Borderline
Semi-structured
personality disorder interviews
questionnaires routine
clinical data
Nehls, 1999
30
Borderline
Interviews
personality disorder
Ramon et al.,
2001
50
*Up to ten service users and three carers at each of 11 sites, plus six service users for a focus
group; final numbers not given.
were given tended to be negative), the diagnosis represented knowledge withheld and
the viewing of others as experts.
Uncertainty about what the diagnosis meant. While for some service users the
diagnosis led to a sense of knowledge and control, for others it was not useful and too
simplistic. It did not appear to match their understanding of their difficulties, and
service users were left feeling unsure whether they were ill or just troublemakers.
Diagnosis as rejection. Some service users described diagnosis as a way for
services to reject them and withdraw from them. This judgement was accepted and
internalised by some service users, which led to service users in turn rejecting services if they were offered at a later stage.
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Experience of care
Diagnosis is about not fitting. Some service users felt that that diagnosis was
being used because they did not fit into any clear categories. They spoke of the
diagnosis as a way for services to say that they could not do anything for them a
dustbin label.
Hope and the possibility of change. Feelings of hope were related to the treatment
a service user was offered. Inevitably if they were told that they were untreatable this
led to a loss of hope and a negative outlook. The name of the disorder itself suggested
a permanency, and service users questioned the use of the label itself as a result,
feeling that different terminology could engender more hope. Service users also
found that they gained most support and hope from people they could trust and who
treated them as a person and not as a diagnosis/label. For some these relationships led
to a position where they felt able to question the diagnosis.
Summary. Horn and colleagues (2007) suggest that clinicians need to be aware
of and sensitive to the impact of the diagnosis; clinicians should engage in discussion about the diagnosis and focus upon what may be useful to the individual user;
clinical interactions should be characterised by trust and acceptance; service users
should have clear communications about what borderline personality disorder
means; and service users should receive the message that people do move on from
this diagnosis. Finally, clinicians should listen to users own descriptions of their
difficulties.
In a study by Crawford and colleagues (2007) diagnosis caused service users to
have mixed views, largely due to the implications for accessing services. Many service users reported being denied services because of the diagnosis. Some felt that the
terminology used was negative (having a disordered personality), that stigma was
attached to the diagnosis, and that they were stereotyped and judged by doctors. Some
service users thought it was unfair to be labelled with such a derogatory term when
they felt that the disorder had developed due to abuse at the hands of others diagnosis
made them feel like victims again. Others felt quite sceptical about the diagnosis
having received a number of different diagnoses during their history of accessing
services.
However, some service users welcomed the diagnosis, feeling that the symptoms
fitted them quite well, and feeling some relief at having a label they could identify
with. Service users were more positive about the diagnosis where the services they
were accessing had a positive approach to the disorder and where they had gained a
sense of shared identity with other service users (Crawford et al., 2007).
In a study by Haigh (2002), which summarised the thoughts of fourteen service
users on services for people with personality disorder in south England and the
Midlands, people with personality disorder tended to feel labelled by society as well
as by professionals after receiving the diagnosis. There was a feeling that many
professionals did not really understand the diagnosis, instead equating it with
untreatability. Other professionals did not disclose the diagnosis to the service user.
Once the diagnosis was recorded, service users felt that the label remained indefinitely and often felt excluded from services as a result. They described having the
label as being the patients psychiatrists dislike and felt that they were being blamed
for the condition. For others, though, receiving the label was a useful experience,
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giving some legitimacy to their experience and helping them begin to understand
themselves. Many felt that there was little clear information available about the
diagnosis.
In a study by Ramon and colleagues (2001) of 50 people with personality disorder from Essex, the meaning of the term revealed a wide range of views from a life
sentence untreatable no hope, to havent got a clue. The majority felt that they
did not really know what the term meant (26%), where as 22% described it as a label
you get when they dont know what else to do and 18% referred to the meaning as
being labelled as bad. Eighteen percent referred to the diagnosis as being indicative
of mood swings. Service users own descriptions of their problems tended to correspond with an additional diagnosis, most commonly of depression and severe anxiety
(36%). Service users preferred not to use the term personality disorder and found that
the diagnosis led to negative attitudes by staff across a range of agencies and a refusal
of treatment. Only 20% perceived the diagnosis to have led to an improvement and
better treatment. A proportion of service users also felt it would be helpful if the term
borderline personality disorder were changed.
In Nehls (1999), 30 people with borderline personality disorder were interviewed
to establish what it means to live with the diagnosis. Service users reported feeling
that professionals held preconceived ideas and unfavourable opinions of people with
a diagnosis of borderline personality disorder. They felt that they were being labelled,
rather than being diagnosed. They struggled with the ramifications of having a negative label rather than the diagnosis itself, such as it affected the delivery of mental
health services and also other forms of healthcare. Most of the people felt that they
were in a paradox, in that they felt that they fitted the criteria, yet experienced the
diagnosis as having no beneficial purpose in guiding treatment.
Self-harm and suicide attempts were commonly reported among participants
interviewed by Nehls (1999). They found the view of self-harm as manipulation to be
unfair and illogical, revealing an underlying prejudice and leading to a negative
response to such behaviour by clinicians. Such attitudes might mean that the reasons
underlying the self-destructive behaviour are missed. Service users felt it was more
productive and accurate to view self-harm as a means of controlling emotional pain
and not as a deliberate attempt to control others.
In a study by Stalker and colleagues (2005), which elicited the views of ten people
with a diagnosis of personality disorder and analysed the data using a grounded
theory approach, half felt that the term personality disorder was disparaging.
However one male participant thought that it accurately described his problems: It
doesnt particularly disturb me. I dont see any problem because that is exactly what
I suffer from a disorder of the personality (Stalker et al., 2005).
4.3.4
Services
Six of the included studies reported service user experience of accessing services,
including specialist services, staffing issues, and of the community-based pilot services for people with personality disorder.
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Access to services
In the study by Haigh (2002), there was strong agreement among service users that
there were not enough services for people with personality disorder and there was a lot
of negativity towards those services that were available, largely due to prejudicial staff
attitudes. In addition, while service users acknowledged that the care programme
approach had the potential to be beneficial, their experience was that it was often not
followed or was unhelpful. Service users views often improved if they were offered
a specialist personality disorder service. They felt that early intervention was crucial to
preventing a major deterioration in personality disorder. Service users also felt that early
intervention services held more positive attitudes towards treatability and intervention.
As people with personality disorders often present in crisis and enter the mental
health service through the police and other emergency services, service users interviewed by Haigh (2002) believed that self-referral may prevent further negative and
unhelpful experiences. It was also felt that immediate support, which is often needed,
could be provided by a telephone service, but ideally 24-hour crisis intervention
teams who had knowledge of and training in personality disorders should be available
as this would reduce the need for inpatient care. As GPs were usually the initial
contact for access to services, it was felt that they should receive more education
about personality disorders.
People interviewed by Nehls (1999) experienced services as intentionally limited,
in that some of them were on a programme that only allowed them to use hospital for
2 days a month, and that the opportunities for a dialogue with mental health professionals were also limited. When in crisis, a dialogue with someone who cares was
desired by service users. The push by some services towards self-care and helping
yourself was felt to divert attention away from what matters to people with borderline personality disorder (that is, a caring response).
Access to services may also be compromised for people from black and minority
ethnic backgrounds (Geraghty & Warren, 2003; see also Chapter 8). Accessing services beyond primary care may be a protracted process. In general mental health services there has been reported a poor understanding of the needs of people from black
and minority ethnic backgrounds, however a service user said that once they had a
entered a specialist treatment service for personality disorder, it was largely able to
meet their cultural needs (Jones & Stafford, 2007).
Staffing issues
Service users interviewed by Haigh (2002) felt that staff needed to be sensitive in
their handling of therapeutic relationships, particularly regarding attachment, issues
of gender, sexual orientation and abuse history. Staff also needed to be consistent in
their assertion of boundaries and be willing to provide a reliable time commitment to
a service and the people they were treating. Service users also valued input from staff
who had experienced mental health difficulties, as it was felt they had more insight.
All service users thought it was important to have respect from staff, to be perceived
as an individual and with intelligence, to be accepting but also challenging and to
view the therapeutic relationship as a collaboration. Problems arose for service users,
however, when boundaries broke down and the staff began to share their own
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problems with service users, and when staff failed to show respect or were disinterested in the client. It was also felt that service users could provide a useful input to
clinicians training.
In the study by Ramon and colleagues (2001) based on semi-structured interviews
and a questionnaire, advocates (98%) and GPs (60%) were perceived as most helpful,
and CMHTs (45%) as least supportive. Service users felt that the ideal services should
be those that advocated a more humane, caring response, an out-of-hours service and
a safe house, an advocate service and helpline.
Specialist services
Specialist services (and long-term treatment) were viewed by the service users interviewed by Haigh (2002) as the most effective way of treating personality disorders.
Service users preferred to make their own choice about services and treatments as this
was felt to increase cooperation and engagement. It was stated that where there was
a lack of choice and the service user opted not to engage with the treatment, this led
to service users being labelled non-compliant.
An acknowledgement by clinicians that short hospital admissions may be needed
on occasion would be welcomed by service users (Haigh, 2002), although with less
emphasis on drug treatments. An option for respite care, whether in hospital or
safe/crisis houses would reduce the need for situations that result in Mental Health
Act assessments. Coercive treatments were not helpful and tended to make situations
worse. Service users said they would benefit from information on treatment options
and being allowed to decide for themselves what would best meet their needs.
Morant and King (2003) evaluated an outpatient service attached to a therapeutic
community during its first 2 years of operation. Fifteen service users (12 women, three
men), the majority of whom had a diagnosis of borderline personality disorder (86%),
who had received treatment for at least 1 month at the therapeutic community, were
interviewed. Most service users found leaving the therapeutic community extremely
difficult, particularly the adjustment from a 24-hour structure to independent living.
Problems reported included depression and anxiety, feelings of isolation and loneliness, and lack of structure. Some service users returned to dysfunctional patterns of
behaviour, struggled to manage relationships with family and friends, and had difficulties in managing the practical issues such as housing and contact with mental health
services. Despite this post-therapeutic dip, most reported finding value in attending
the outpatient service, but also found it to be insufficient. Those interviewed also struggled making the move back to a CMHT due to the passive and dependent role CMHTs
encourage, in contrast with the responsibility people take for their own care in the therapeutic communities. Three people were admitted as inpatients during the period
covered by the study. However, service users also reported a gradual structuring of
daily life and establishing a network of resources. They additionally reported that the
outpatient service helped them to make the transition to independent living.
Community-based pilot services for people with personality disorder
An evaluation of 11 community-based pilot sites with dedicated services for people
with a personality disorder (Crawford et al., 2007) included qualitative interviews and
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Experience of care
focus groups with service users and carers. The study sought to interview seven to ten
service users and up to three carers and former service users from each site; six
current service users formed the focus group. A number of key themes emerged that
covered the entire journey through the service from the entry or coming in process
and assessment, through experiences of different treatments, relationships with staff
and other service users, boundaries and rules, out-of-hours services, to outcomes and
endings.
Experiences of entering the service depended on the service they were entering,
but also on the users prior experience of services. Many felt rejected or that they had
been treated badly by other services, which they attributed to the personality disorder
diagnosis and the complex needs and behaviours associated with it. Consequently,
many of the services users felt desperate for help and relieved to be offered a service
with specialist knowledge and skilled staff. Their hopes and expectations were high,
but alongside this feeling was a fear of further rejection.
Service users valued receiving clear, written information about the service, particularly where it differed from mainstream services. It was also important for service
users to have a welcoming response from the service; where this was not the case the
service was experienced as negative and daunting.
Those interviewed tended to find assessment difficult, traumatic and upsetting,
largely because of the focus on painful past experiences and the emotions these raised.
Some service users felt that this process was over-long as they had to undertake tests
and questionnaires over several weeks. The availability of staff to answer questions
and offer support made the process easier, especially as support was often not felt to
be available outside the service.
Service users welcomed services that were flexible and accessible, and staff who
were responsive to the needs of service users. Service users also valued having a
range of options to choose from and access at different times such as one-to-one
sessions, out-of-hours phone support, crisis beds and an open clinic. It was also
important that the therapy was not time limited.
Specialist services for personality disorder can lead to a strong sense of belonging
for many service users due to sharing experiences with other service users and building relationships with staff. Service users also reported that these services tended to
have a more positive focus, with staff having more optimistic beliefs about an individuals capacity for change and more discussions with service users about recovery.
Most of the services offered some form of psychotherapy. While most service
users found psychotherapy complex and challenging, they also found it helpful and
positive. Therapists support in helping service users engage with and address their
difficulties was valued and appreciated. Psychotherapy was viewed by service users
as the element of the service that brought about the most significant changes and positive outcomes for people. It allowed them to understand themselves and improve their
behaviour, and provided an opportunity to practice behaviours and/or communications in a safe environment. Aspects of psychotherapy, such as the DBT skills group,
allowed people to find new ways of coping and thinking about their difficulties.
Rules and boundaries were a contentious issue in many of the pilot sites. People
coped with these better when they were made explicit and transparent, and were able
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Experience of care
to be negotiated, rather than being implicit and/or forced upon them. Some of the
rules were felt to be too rigid and impractical, for example, attending group therapy
in order to access individual therapy, not having friendships with other service users,
coming off medication before starting therapy, and various rules around self-harm,
such as not being able to talk in a group until the person has stopped self-harming.
The need for out-of-hours support was a common theme raised by service
users. Crises usually happened outside the hours of 9 am to 5 pm, and if people did
have to access a service during a crisis outside this time, the staff often responded
inappropriately. Service users felt that they needed a person-centred and responsive
out-of-hours service.
Few services offered support to carers. Where they were offered, carers appreciated the educational and information-giving aspects and the support of other carers.
However, carers would have liked more information about the diagnosis, suggestions
for how to access help and more information about care and treatment. In addition,
carers felt excluded from the service users treatment.
It was felt that the most productive relationships were with staff who were
non-judgmental, helpful, supportive, caring, genuine and real, positive, flexible,
accessible, responsive, skilled and knowledgeable. Other valuable attributes were:
treating service users as whole people rather than as a collection of symptoms; being
unshockable; being honest about themselves to some degree while maintaining
boundaries; treating the service user as an equal; believing in the service users
capacity for change; and consequently encouraging and supporting them to achieve
their goals.
Having relationships with other service users was on the whole viewed as positive, although this depended on the service model offered. Service users found it
productive to share their experiences with people, as it provided them with ideas
for coping, a shared sense of identity, a social network, and helped to boost their
confidence. However, these relationships were more difficult to negotiate if they spent
long periods of time together and there was an imbalance between giving and receiving support.
Service users expressed much anxiety about leaving a service, which was mainly
centred on being required to leave before feeling ready to do so. Service users felt that
a more structured approach to endings was needed, and that there should be some
way of retaining a link with the service and/or service users. It was also felt that reassurance was needed that they had the opportunity to restart treatment in a service if a
crisis developed. Most service users felt strongly that abrupt endings were unhelpful
because there was little opportunity to prepare and to work through any issues that
arose out of it.
The reports from service users suggest that nearly all of the pilot services had been
beneficial to people. They improved services users confidence, self-esteem and selfawareness. Service users also came to understand their behaviours and this frequently
led to changes in behaviour (such as less self-harm and fewer A&E admissions and
crises), particularly as they became better able to identify the warning signs and triggers. It was also reported that services improved service users relationships and
interactions with others, particularly as a result of improved communication skills.
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In addition, service users felt more assertive and independent, felt that they had learnt
new coping skills including managing their anger better, were able to accept care, and
were increasingly thinking about returning to work or study, or able to remain in
work. Service users also felt listened to and hopeful, and in more control of their lives.
However, a few service users felt that the therapy they received had been damaging
and/or humiliating and distressing.
However, it should be noted that in these pilot services the majority of service
users were white women. Men and people of an ethnic minority were under-represented
and their inclusion could have led to a less positive experience.
4.3.5
Treatments
Two studies reported on experiences of group psychotherapy for people with borderline personality disorder and there were two on DBT.
Group psychotherapy
Hummelen and colleagues (2007) interviewed eight people with borderline personality disorder who dropped out of long-term group psychotherapy following intensive
day hospital treatment. The main reasons for dropping out were: finding the transition
from day hospital treatment to outpatient group therapy too difficult and having
bad experiences of the previous day hospital treatment; finding group therapy too
distressing service users reported having strong negative feelings evoked in therapy
and feeling that these could not be adequately contained in an outpatient setting;
outpatient group therapy being insufficient because too much time elapsed between
sessions; being unable to make use of the group or being unsure of how the group was
meant to work; experiencing a complicated relationship with the group and having a
sense of not belonging; and various aspects of the patient-therapist relationship being
negative (such as therapists not explaining adequately how the group worked, not
dealing effectively with criticism and not acknowledging the patients distress). Other
service users found it too difficult combining work, study, or parenting responsibilities with therapy. Other reasons included a desire to escape from therapy and no interest in further long-term group therapy.
In Crawford and colleagues (2007) group psychotherapy was experienced by
some service users as a good opportunity to share experiences with others and they
valued the peer support. However, others, who would have preferred individual therapy, struggled where group therapy was the only option, particularly in understanding the way the group operated and its rules.
Dialectical behaviour therapy (DBT)
Fourteen women with borderline personality disorder were interviewed to ascertain
what is effective about DBT and why (Cunningham et al., 2004). Participants reported
that DBT allowed them to see the disorder as a controllable part of themselves rather
than something that controlled them, providing them with tools to help them deal
with the illness. They reported that the individual therapy played an important part,
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particularly when the relationship with the therapist was viewed as non-judgemental
and validating and the therapist pushed and challenged them. However, where the
client felt that the therapist did not push enough or too much, the therapy seemed to
become less effective. Another key component in the relationship is equality, with the
client feeling that they were operating on the same level as the therapists and working towards the same goal. This equality seems to empower people to take more
responsibility in their own therapy.
Skills training was seen as complimenting the individual therapy and being most
effective when the skills trainers were able to help the service users apply the skills
to their lives. The trainers needed to have a strong understanding of the skills themselves rather than just use the manual the latter proved to be less effective for service users (Cunningham et al., 2004).
Service users found some skills more helpful than others. Self-soothe, distract
and one mindfulness were the skills reported as useful most commonly. The skills
most used also corresponded to the skills most easily understood. The support that
service users received in the skills group also proved to be valuable.
The 24-hour telephone skills coaching was valued by the service users as a means
of supporting them through their crises (Cunningham et al., 2004).
Service users reported that DBT had had a positive effect on their relationships
in day-to-day interactions, and although problems with friends and family did
not disappear, they were more manageable. Service users have also reported being
less paranoid in public. Interpersonal skills were enhanced and this was believed to
be as a result of the improvement in service users abilities to control their
emotions and a reduction in self-harm. Although most service users felt that there
were still areas that they had difficulty dealing with, some participants felt that their
level of suffering had decreased, although for others it remained constant. Clients
also expressed higher levels of hope and a desire to live more independently
(Cunningham et al., 2004).
In a study by Hodgetts and colleagues (2007) of five people (three women and
two men) with borderline personality disorder being treated in an NHS DBT service
in the south west of England, the participants reported that DBT was presented to
them as the only treatment for personality disorder. This may have raised anxieties
in service users about what was expected of them. While some valued the sense
of structure to the treatment, others would have preferred a more tailored and flexible approach. There were also mixed feelings about the combination of individual
therapy and group skills training. For one person the challenges of DBT proved
too much so she left the programme. Another factor in her leaving was that she
believed she was refused support from a crisis service because she was in a DBT
programme. All of the clients interviewed saw the therapeutic relationship as important, valuing the collaborative working and the sharing of experiences. The group
work gave a sense of shared identity. The participants in the group all commented on
how DBT had affected them; one said that he cut himself less; others were not sure
if changes in their lives were due to DBT or other factors. One person was concerned
that now that the option of self-harm had been removed, they had no other coping
mechanisms.
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4.3.6
One study by Stalker and colleagues (2005) reported on personal coping strategies.
Participants in the survey recognised a number of strategies they employed to help
them cope, the most common of which were: visiting a mental health resource centre;
talking to a professional or a partner; keeping active; doing exercise; going to bed;
medication; keeping yourself to yourself; fighting the illness; use of drugs and alcohol; overdosing; and cutting. The participants were fully aware that some of these
activities were harmful, but felt they had no alternatives: When I am feeling really bad,
[drinking is] the only thing that really blots out the memories (Stalker et al., 2005).
4.3.7
One study by Haigh (2002) reported on public awareness and education about personality disorder. It was felt by service users that more education about mental health
difficulties should be provided in schools to reduce stigma, to educate about vulnerability and to teach students how to seek appropriate help if they experienced difficulties. Leaflets in GP surgeries and support groups for families/carers were also
suggested. Service users also felt that it was important that people became aware that
a diagnosis of personality disorder doesnt mean youre not a nice person.
4.3.8
Helpful features identified by service users (Haigh, 2002) included: early intervention
before crisis point; specialist services; choice of treatment options; care tailored to the
individual; therapeutic optimism and high expectations; developing service users
skills; fostering the use of creativity; respecting a service users strengths and weaknesses; clear communication; staff that were accepting, reliable and consistent;
supportive peer networks; shared understanding of boundaries; appropriate follow-up
and care; and making use of service users as experts in developing services and staff
training.
Unhelpful features noted by service users (Haigh, 2002) included: availability of
services determined by postcode; services only operating in office hours; lack of
continuity in staff; staff without appropriate training; treatment decided only by diagnosis and/or funding; inability to fulfil promises made; staff that were critical of service users expressed needs; staff only responding to behaviour; negative staff
attitudes; rigid adherence to a therapeutic model even when it is unhelpful; long-term
admissions; use of physical restraint, obtrusive levels of observation, inappropriate
use of medication, and withdrawal of contact used as sanction.
According to service users interviewed by Haigh (2002), services could be
improved if: professionals acknowledged that personality disorder is treatable; they
received a more positive experience on initial referral as this would make engagement
with a service more likely; if the ending of a therapeutic relationship was addressed
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adequately; and if services were not removed as soon as people showed any signs of
improvement, because this tended to increase anxiety and discourage maintenance of
any improvement.
4.4
4.4.1
Introduction
When a person is diagnosed with borderline personality disorder, the effect of the
diagnosis on families and carers is often overlooked. However, a recent study has
shown that psychological distress among the families and friends of people with
borderline personality disorder has been likened to the distress experienced by carers
of people with schizophrenia (Scheirs & Bok, 2007).
The use of the term family in the literature generally refers to parents, siblings,
spouses and children. This guideline uses the term family/carer to apply to all
people who have regular close contact with the person.
A systematic search for literature on family/carer needs, including interventions,
was not undertaken on the advice of the GDG since little empirical research exists.
This section therefore gives a narrative review of the available evidence and expert
consensus views.
4.4.2
It has been suggested (expert opinion) that families of people with a borderline
personality disorder could experience what Hoffman and colleagues (2005) have
described as surplus stigma, which is stigma over and above that experienced by
families/carers of people with other mental illnesses. Unfortunately, there is scant
empirical evidence available to support or refute this hypothesis.
Scheirs and Bok (2007) administered the Symptom Check List-90 (SCL-90) to 64
individuals biologically related (parents or siblings) or biologically unrelated
(spouses or friends) to people with borderline personality disorder. The group had
higher scores on all symptom dimensions of the SCL90 than the general population.
There was no significant difference between those who were biologically related to
the person with borderline personality disorder and those who were not.
Hoffman and colleagues (2005) assessed burden, depression, guilt and mastery in
families of people with borderline personality disorder. Forty four participants (representing 34 families) participated in a Family Connections programme (the outcome
of this study is described in section 4.4.3) and found significant burden as measured
by the Burden Assessment Scale and Perceived Burden Scale, significant depression
as measured by the Revised Centre for Epidemiological Studies Depression Scale,
significant grief as measured by a Grief Scale, and low levels of mastery as measured
on the Mastery Scale. It is important to note that there was significant variation in
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Experience of care
scores. This study was replicated by Hoffman and colleagues (2007b) with 55 participants who found that mean scores on the measures of burden, guilt and depression
were consistent with those in the previous study.
Families/carers of people with borderline personality may have needs that are at
least equivalent to families/carers of people with other severe and enduring mental
health problems.
4.4.3
No RCTs of interventions specifically aimed at families/carers of people with borderline personality disorder were identified from the search for RCTs described elsewhere in this guideline, and an additional systematic search was not undertaken on
the advice of the GDG. There was therefore little empirical evidence to review.
Interventions for families of people with borderline personality disorder have
been strongly influenced by the literature drawn from family intervention treatments
for other disorders (for example, schizophrenia). This literature has indicated that
carers find psychoeducation and information most helpful (Dixon et al., 2001).
However, research by Hoffman and colleagues (2003) provides a note of caution
to those who advocate interventions of this type. They assessed 32 family members
for their knowledge of borderline personality disorder. Knowledge was then correlated with family burden, depression and expressed emotions. Contrary to expectations greater knowledge about borderline personality disorder was associated with
higher levels of burden, depression, distress and hostility towards the person with the
disorder.
Berkowitz and Gunderson (2002) have piloted a multi-family treatment
programme strongly influenced by psychoeducative approaches used in schizophrenia. However no outcome data were reported.
Hoffman and colleagues (2005) conducted a study examining the impact of the
Family Connections programme, which aims to reduce burden, grief, depression and
enhance mastery in families of people with borderline personality disorder. The
programme is a 12-week manualised education programme that is strongly influenced
by DBT principles. The programme also had a strong educational component in
which information is provided about borderline personality disorder and research.
There is a great emphasis on learning new skills (coping and family skills) and the
programme aimed to foster social support. This study had 44 participants (34 families) and the families were evaluated pre-intervention, post-intervention and at 6
months follow-up. Participants showed reductions in burden, grief and enhanced
mastery. There was no significant difference in depression. The results were maintained at follow-up.
Hoffman and colleagues (2007b) was a replication of the 2005 study. Fifty five
participants took part in this programme. They were assessed using the same measures
as the 2005 study: pre- and post-intervention and at 3 months follow-up (rather than
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Experience of care
6 months in the previous study). As in the previous study, participants showed
improvements in grief, burden and mastery. There was also a significant reduction in
depression. While these findings are of interest and this intervention shows promise, clinical trials examining the effectiveness of this intervention have not yet been published.
There is a lack of high quality empirical evidence on interventions for families/
carers of people with borderline personality disorder, although emerging evidence
suggests that structured family programmes may be helpful. Hoffman and colleagues
(2003) study provides a cautionary note about giving information. Their findings
suggested that more information alone could be associated with more distress.
4.4.4
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Experience of care
In summary, there is not enough evidence to confidently answer this question. It
appears that the relationship between the family environment and the prognosis of
borderline personality disorder is complex and multi-dimensional (Lefley, 2005).
There is some tentative evidence that families of people with borderline personality
disorder could interact in ways that are unhelpful for the person with borderline
personality disorder. However, Lefley (2005) cautions against overly blaming families and suggests that the literature does not fully consider temperamental vulnerabilities in people with borderline personality disorder.
4.4.5
There are no empirical studies to review in this section. The literature is restricted to
expert opinion and consensus.
4.4.6
4.5
SUMMARY OF THEMES
The personal accounts and the literature reveal that during its course, borderline
personality disorder can be experienced as extremely debilitating. People with the
disorder report having difficulty controlling their mood, problems with relationships,
an unstable sense of self, and difficulty in recognising, understanding, tolerating and
communicating emotions, which can lead to the use of coping mechanisms such as
self-harm. When assessing people with borderline personality disorder it is important
to recognise that physical expressions, such as self-harm, are usually indicative of
internal emotions.
People with borderline personality disorder have reported that they fear rejection
on entering a service, particularly if they have had prior negative experiences, and
although they feel desperate for help, this can make engaging in an assessment
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more difficult. Assessments can be traumatic and upsetting, due in large part to the
focus on painful past experiences. Explanation about the process, clear, written
information about a service, and the opportunity to ask questions were all welcomed
and valued.
People have reported that being diagnosed with borderline personality disorder
can be both a positive and negative experience. For some it can provide a focus, a
sense of control, a feeling of relief, and a degree of legitimacy to their experience. In
general, people are more positive about the diagnosis when it has led to accessing
services, and where those services have taken a positive approach to the disorder.
However, for others, the diagnosis was equated with a loss of hope and there were
reports of being denied services because of the diagnosis and associated misconceptions about its untreatability. Little information or explanation appears to be given
with this diagnosis, and where it has been given it has tended to be negative. There
was a feeling that different terminology, other than borderline personality disorder,
could engender more hope. Both the personal accounts and the literature demonstrate
that the diagnosis can provoke negative attitudes in healthcare professionals across a
range of services and lead to a refusal of treatment.
Both the personal accounts and the qualitative literature highlight the need for
healthcare professionals to be aware of the stigma surrounding borderline personality
disorder and to be sensitive to the impact of the diagnosis on a persons life and their
sense of hope for the future.
There is a general consensus from the literature that there are not enough services
for people with personality disorder (and clinicians should be aware that access to
services may be compromised for people from black and minority ethnic backgrounds). Service users felt that specialist services are most effective in treating
personality disorders and that it is important to recognise that treatment may need to
be long term. Early intervention was considered crucial in preventing a major deterioration in the disorder, and having the option to self-refer could prevent further
unhelpful and negative experiences.
When working with people with borderline personality disorder, it was felt that
healthcare professionals need to establish a collaborative partnership with the service
user that is non-judgemental, supportive, caring, genuine and positive, and that they
should believe in their capacity to change and encourage and support them to achieve
their goals. Healthcare professionals also need to be sensitive in their handling of the
therapeutic relationship, particularly regarding issues of attachment, sexual orientation and abuse history. They need to be consistent in their assertion of boundaries and
willing to provide a time commitment to clients.
When in crisis, people felt that access to an out-of-hours crisis service was
needed; a person-centred response from someone who cares and had knowledge of
the disorder was felt to preferable. Working with service users to explore potential
triggers for crises and strategies for managing these is useful as part of a care plan that
also includes crisis advice.
Being able to have a choice about services and treatment was also important as
this was felt to increase the service users cooperation and engagement. Where
97
Experience of care
this choice was lacking and the service user opted not to engage with a particular
treatment this was often felt to lead to being labelled as non-compliant. Service users
own judgement about suitability or unsuitability of a service or treatment should be
respected.
Service users felt that specialist personality disorder services were helpful in
improving their self-esteem, self-awareness, and their understanding of their behaviour, which in turn led to a change in their behaviours (for example, a reduction in
self-harm). These services also helped to improve their relationships, enabling them
to feel more assertive and independent. They had established new coping skills and
felt better able to accept care. However, where this service included a residential
component, a post-therapeutic dip was often reported as people adjusted to independent living.
Most of the services offered some form of psychotherapy, which although
complex and challenging, was experienced as helpful and positive. Group
psychotherapy was viewed as a good opportunity to share experiences with others and
obtain peer support, although for some they would prefer individual therapy, as they
found the group too distressing. This highlights the importance of how treatments can
differ for individuals and the importance of client choice.
Service users have been positive about DBT because it has helped them to
improve their relationships and their ability to control their emotions and reduce selfharm. However, while some valued the structure of the approach, others preferred the
programme to be more tailored and flexible.
Leaving a treatment or service is often difficult for people with borderline personality disorder and can evoke strong emotions as they may feel rejected. It has been
recognised that a more structured approach to endings is needed. People also felt
they would like reassurance that they could access the service again in a crisis.
Information about support groups, activity groups and self-management techniques
may also be useful.
Few services offer support to families/carers despite research that demonstrates that psychological distress in families and friends of people with borderline personality disorder is similar to that experienced by families/carers of
people with schizophrenia, and they score highly on scales measuring burden and
depression.
Where support is offered it tends to be centred on provision of education and
information. Families/carers would like more information around the diagnosis,
suggestions on how to access help and more information about care and treatment.
However, there is a warning note that greater knowledge about borderline personality
disorder could increase family/carer distress. Most families/carers reported feeling
excluded from the service users treatment.
There is evidence to suggest a correlation between childhood adversity and
borderline personality disorder, and that a service users current family environment
could influence the course of the disorder. However, despite this evidence it is important not to assume that all family environments are toxic and have caused the
disorder because families/carers could feel unfairly blamed for the service users
difficulties. Collaborating with families/carers (when the service user is in agreement)
98
Experience of care
and supporting them could provide a valuable resource for the person with borderline
personality disorder.
4.6
4.6.1
Access to services
4.6.1.1
4.6.2
4.6.2.1
4.6.3
Involving family/carers
4.6.3.1
Ask directly whether the person with borderline personality disorder wants
their family or carers to be involved in their care, and, subject to the
persons consent and rights to confidentiality:
encourage family or carers to be involved
ensure that the involvement of families or carers does not lead to withdrawal of, or lack of access to, services
inform families or carers about local support groups for families or
carers, if these exist.
4.6.4
4.6.4.1
Experience of care
4.6.5
4.6.5.1
Anticipate that withdrawal and ending of treatments or services, and transition from one service to another, may evoke strong emotions and reactions in people with borderline personality disorder. Ensure that:
such changes are discussed carefully beforehand with the person (and
their family or carers if appropriate) and are structured and phased
the care plan supports effective collaboration with other care providers
during endings and transitions, and includes the opportunity to access
services in times of crisis
when referring a person for assessment in other services (including for
psychological treatment), they are supported during the referral period
and arrangements for support are agreed beforehand with them.
100
5.
5.1
INTRODUCTION
5.1.1
Classification of therapies
Psychosocial interventions designed to help people with borderline personality disorder cover a wide range of approaches, all of which are talking treatments but which
differ in intensity, complexity and method (for example, brief psychoeducational
approaches, once-weekly psychological therapy sessions and structured programmes
of treatment). This chapter reviews brief psychological interventions, individual
psychological therapies, psychological therapy programmes, arts therapies, complementary therapies and therapeutic communities. In addition, data from RCTs, where
they exist, are analysed by outcome across all therapies.
Besides arts therapies, complementary therapies and therapeutic communities, the
GDG and review team delineated three broad classes of psychological therapies: first,
brief psychological interventions, which were defined as low-intensity interventions
given for less than 6 months; second, individual psychological therapies, usually
offered weekly but sometimes twice-weekly, in an outpatient setting (individual
psychological interventions can also be configured in different ways, including standard interventions and brief interventions, and these are reported separately); third,
psychological therapy programmes that combine more than one treatment (for example, individual therapy plus group therapy) (Campbell et al., 2000) and are delivered
by more than one therapist. More detailed descriptions of the therapies are given in
the relevant sections below.
5.1.2
5.1.3
There is no agreement on what constitutes the core problem in borderline personality disorder. As the diagnosis merely requires five out of nine operational criteria to
be present there are many different ways to qualify for the diagnosis, resulting in
considerable heterogeneity among trial populations. This heterogeneity and variation
in severity is compounded by frequent co-occurrence of other personality and axis 1
disorders, the detail of which is often not reported.
A related difficulty is in choice of outcome measures, as different treatments target
specific problems and use measures designed to capture a specific outcome. For example, a common outcome measured is the incidence of deliberate self-harm, but only
some people with borderline personality disorder harm themselves. The same applies
to other outcomes, such as impulsivity and hostility. More universal symptom measures (such as depression) have broader applicability but are less specific to borderline
personality disorder per se. Alternatively, pragmatic trials may measure variables
related to service usage such as hospitalisation or health-related quality of life.
A challenge in conducting trials, and an important issue in developing clinically
effective treatment models, is to engage and retain a representative sample of people
with borderline personality disorder, since disengagement with services is common
and high attrition rates from trials are usual.
5.1.4
The issues reviewed above have considerable implications for reviewing efficacy of
treatments in borderline personality disorder, including psychological therapies. The
heterogeneity of the population samples and the outcome measures makes it difficult
to combine studies and to generalise across borderline personality disorder as a
whole.
102
5.1.5
5.1.6
Evidence search
Date searched
Update searches
Study design
RCT
Patient population
Treatments
Outcomes
See below
Those for psychological and psychosocial therapies were separated from those for
pharmacological interventions, which are considered elsewhere. The electronic
databases searched are given in Table 6. Details of the search strings used are in
Appendix 7.
Nineteen RCTs were found from searches of electronic databases and all were of
brief psychological therapies, individual psychological therapies or psychological therapy programmes. One was excluded because it was found not to be randomised when
the paper copy was retrieved (BOHUS20046). A further two were analysed separately
since they were undertaken in substance-dependent populations (LINEHAN1999;
LINEHAN2002). There was one three-armed trial. Four further trials that included
participants with borderline personality disorder among others, but did not report
results separately, were also excluded at this stage (ABBASS2008; HUBAND2007;
JOYCE2007; SPRINGER1996). Seven of the remaining trials were of DBT, but there
were also trials of other cognitive behavioural therapies and psychodynamicallyoriented therapies (see Table 7). In addition, four RCTs of combination therapy (that
is, an individual psychological therapy or psychological therapy programme added to
a pharmacological treatment) were found.
In addition, the GDG contacted known researchers working on relevant trials for
which pre-publication data may be available or which were likely to be published
while the guideline was being developed. This yielded seven studies: one on
mentalisation-based therapy (MBT) (ANDREA unpublished7); one on systems
training for emotional predictability and problem solving (STEPPS) (BLUM2008);
6Here
and elsewhere reviewed studies are referred to by a study identifier made up of the first authors
name in capital letters and date of the earliest publication relating to the study. All references relevant to a
study identifier are in Appendix 16.
7Not an RCT.
104
(1) TYRER2003
(2) WEINBERG2006
(1)(2) MACT
(1)(2) Treatment as
usual (TAU)
Study IDs
Treatment
Comparator
2 RCTs (100)
No. trials
(Total participants)
Brief psychological
therapies
(1) TAU
(2) Good clinical care (manualised
intervention)
(3) DBT or modified psychodynamic
supportive psychotherapy
(4) TAU
(5) Transference-focused psychotherapy
(6) Individual psychotherapy
(1) STEPPS
(2) CAT
(3) Transference-focused psychotherapy
(4) CBT
(5) Schema-focused therapy
(6) Interpersonal group therapy
(1) BLUM2008
(2) CHANEN2008
(3) CLARKIN2004
(4) DAVIDSON2006
(5) GIESEN- BLOO2006
(6) MUNROE-BLUM1995
6 RCTs (708)
Individual psychological
therapies
(1) TAU
(2) Transference-focused psychotherapy
or modified psychodynamic supportive
psychotherapy
(3) Waitlist control
(4)(6) TAU
(7) Client-centred therapy
(8) TAU
(1) BATEMAN1999
(2) CLARKIN2004
(3) CARTER unpublished
(4) KOONS2001
(5) LINEHAN1991
(6) LINEHAN2006
(7) TURNER2000
(8) VAN DEN BOSCH2002
8 RCTs (423)
Psychological therapy
programmes
105
Date searched
Update search
April 2008
Study design
Patient population
Treatments
Outcomes
See below
8Trial
9The
106
Psychological therapy
programmes
13 non-randomised
trials (638)
8 non-randomised
studies (397)
Study IDs
(1) BELLINO2005
(2) BLUM2002
(3) BROWN2004
(4) CLARKIN2001
(5) GABBARD2000
(6) HENGEVELD1996
(7) LEICHSENRING2007
(8) LOFFLER-STASTKA2003
(9) LOPEZ2004
(10) MARKOWITZ2006
(11) NORDAHL2005
(12) RYLE2000
(13) WILBERG1998
(1) ALPER2001
(2) ANDREA unpublished
(3) BARLEY1993
(4) CUNNINGHAM2004
(5) HARLEY2007
(6) LANIUS2003
(7) MCQUILLAN2005
(8) PRENDERGAST2007
Treatment
(1) DBT
(2) MBT
(3)(8) DBT
Research design
(comparator, if
applicable)
5.1.7
Individual psychological
therapies
Psychological therapy
programmes
A large number of outcomes, particularly rating scales, were reported by the RCTs of
psychological therapies. Those that reported sufficient data to be extractable and were
not excluded are listed in Table 10. See Chapter 2 and Appendix 10 for more information on how the GDG addressed the issue of outcomes, including details of the
outcomes reported by RCTs reviewed during the guideline development process.
Table 10: Outcomes extracted from psychological studies
Category
Scale
Aggression
Anger
Anxiety
Scale
Zanarini Rating Scale (ZAN) - borderline personality
disorder
Depression
Drug-related
General functioning
Mental distress
GSI
Hopelessness
Impulsiveness
Irritability
OAS irritability
Quality of life
Self-harm
See Table 11
Service use
109
Scale
Length of admission following self-harm
Further psychiatric outpatient treatment
Number of years on 3 prescribed drugs
Social functioning
Suicidality
See Table 11
Acceptability
5.1.8
5.1.9
Study populations
5.1.10
Publication bias
There were too few RCTs to undertake funnel plots to ascertain publication bias so
this could not be explored. However, unpublished studies were sought and included
where possible.
Product champions
See Section 5.1.4 above.
110
Self-harm acts
Definition: deliberate;
resulted in visible tissue
damage, nursing or
medical intervention
required
Not reported
Frequency of non-suicidal
self-injury (not defined or
reported separately)
Study ID
BATEMAN1999
BLUM2008
CLARKIN2004
CARTER unpublished
CHANEN2008
DAVIDSON2006
Not measured
OAS suicidality
Not reported
Not measured
Not reported
Not used
Not reported
Not reported
Not used (authors
schedule available
on request)
Based on Acts of
Deliberate SelfHarm Inventory
(Davidson, 2008)
No definition given
Not reported
Not reported
Frequency of suicide
attempts (not defined or
reported separately)
Continued
Not measured
Not reported
Suicidal ideation
Published scale
Suicidal acts
111
112
Published scale
BPDSI
PHI
PHI
Suicidal acts
Reports parasuicidality
subscale of the BPDSI (see
left)
Self-harm acts
Reports parasuicidality
subscale of the
Borderline Personality
Disorder Severity Index
(BPDSI) (Arntz et al.,
2003) which the GDG
chose not to extract
(see Appendix 16)
Number of parasuicidal
acts (unclear how
defined) acts occurring
as part of one episode
were counted separately
in number of acts count,
but number of episodes
also counted
Study ID
GIESEN-BLOO2006
KOONS2001
LINEHAN1991
Beck Suicidal
Ideation Scale
Suicidal ideation
Not reported
Parasuicidal events as
defined by the PHI
LINEHAN2006
MUNROE-BLUM1995
TURNER2000
TYRER2003
See left
Not reported
Not reported
PHI
Continued
Beck Suicidal
Ideation Scale
Not reported
Suicidal
Behaviors
Questionnaire
(Linehan &
Nielsen, 1981,
unpublished)
Based on an
unpublished scale
Target Behaviour
Ratings (TBR)
Not reported
Suicide Attempt
Self-Injury
Interview (nonambivalent suicide
attempts)
113
114
Self-harm acts
Reported as
parsuicidal/self-mutilating
acts using score on
Lifetime Parasuicide
Count (LPC)
Not useable as does not
give count of episodes/
acts; it is more of a
composite measure of
overall parasuicidality
in period under review
Parasuicidal events as
defined by the PHI
Study ID
VANDENBOSCH2002
WEINBERG2006
PHI
BPDSI
Measured as parasuicidal
acts score on BPDSI which
the GDG chose not to
extract (see Appendix 16)
Published scale
Suicidal acts
Suicidal
Behaviors
Questionnaire
Not reported
Suicidal ideation
Sub-analyses
Since the dataset is fairly small and there are a large number of outcomes, with different rating scales being used for the same outcome, the following sub-analyses were
planned a priori to explore potential moderators:
Potential moderator
Sub-categories
Length of treatment
Manualised
Yes versus no
Number of sessions
Type of therapy
Therapist experience
Author allegiance
However, since the RCTs had few outcomes in common, it was not possible to
undertake these sub-analyses. Therapist experience and author allegiance are
described.
5.2
ARTS THERAPIES
5.2.1
Introduction
Arts therapies developed mainly in the US and Europe during the 20th century. They
have often been delivered as part of treatment programmes for people with personality disorders including those with borderline personality disorder. Four arts therapies
are currently provided in Britain: art therapy, dance movement therapy, dramatherapy
and music therapy. While the four different modalities use a variety of techniques and
arts media, all focus on the creation of a trusting therapeutic and safe environment
within which people can acknowledge and express strong emotions (Payne, 1993).
These interventions are underpinned by the belief that creative processes encourage
self-expression, promote self-awareness and increase insight, in the context of a
reparative therapeutic relationship, thereby enhancing a persons psychological wellbeing. The creative medium in arts therapies allows the therapist to work with both
verbal and non-verbal material and at different levels according to the level of disturbance in the client.
In art therapy, people are encouraged to use a range of art materials to make
images and the focus is on the relationship between the image, the creator and the
therapist (Waller & Gilroy, 1992; Gilroy, 2006). In dance movement therapy, therapists focus on the use of body movement and connections between mind, body and
115
5.2.2
Studies of arts therapies were sought from the citations downloaded in the search for
RCTs undertaken at the beginning of the guideline development process and
described above. No studies were found, so an additional search was undertaken for
primary research in arts therapies in any personality disorder. Information about the
databases searched and the inclusion/exclusion criteria used are in Table 12.
No studies were found from the search, therefore a general narrative review was
undertaken.
5.2.3
Arts therapies have been widely used as a part of treatment programmes for people
with borderline and other forms of personality disorder in Britain (Bateman &
Fonagy, 1999; Haigh, 2007; Crawford et al., 2007). In this context arts therapies are
usually delivered in groups; individual therapy is less commonly provided. While
numerous case series have described the use of arts therapies for people with borderline personality disorder (for example, Olsson & Barth, 1983; Eren et al., 2000;
Schmidt, 2002; Gottschalk & Boekholt, 2004; Havsteen-Franklin, 2007) very little
Date searched
Study design
Patient population
Personality disorder
Interventions
Music therapy, psychodrama, art therapy, dance therapy, writing therapies, colour therapy
Outcomes
see Table 10
116
5.2.4
Clinical summary
There is very little research on the effectiveness of arts therapies for people with
borderline personality disorder and therefore no recommendations could be made.
5.2.5
No economic evidence on arts therapies for people with borderline personality disorder was identified from the systematic search of the economic literature. Details on
the methods used for the systematic review of economic literature are described in
Chapter 3.
5.3
5.3.1
For the purposes of this review therapy lasting less than 6 months is defined as brief.
(This is distinguished from time-limited therapies lasting more than 6 months but
less than 1 year).
Manual-assisted cognitive therapy (MACT; Evans et al., 1999) was developed as
a public health intervention for the large numbers of people who repeatedly attempt
suicide (parasuicide) rather than for borderline personality disorder per se. However, a
high proportion of people in this population meet criteria for borderline personality
disorder, and this subpopulation is therefore similar to the one for whom DBT was
developed. The intervention is a brief, cognitively-oriented and problem-focused therapy comprising up to five sessions within 3 months of an episode of self-harm, with
the option of a further two booster sessions within 6 months. Bibliotherapy, in the form
of a 70-page booklet (Schmidt & Davidson, 2002), is used to structure the treatment
sessions and to act as an aide-memoire between sessions. The manual covers an evaluation of the self-harm attempt, crisis skills, problem solving, basic cognitive techniques to manage emotions and negative thinking, and relapse-prevention strategies.
5.3.2
RCT evidence
Summary study characteristics of the two trials of MACT are in Table 13 and the
summary evidence profile for RCTs of MACT is in Table 14.
There is some evidence that a low-intensity intervention (MACT) has some effect
on reducing self-harm and suicidal acts (reported together as a continuous measure),
but no effect when reported as parasuicide as a dichotomous measure. Both these
outcomes were reported by a single study, therefore it is difficult to draw firm conclusions without further research. There was no evidence of other effects on the symptoms of borderline personality disorder.
2 RCTs (100)
Study IDs
(1) TYRER2003
(2) WEINBERG2006
N/% female
(1) 31
(2) 1840
Comparator
TAU
Additional intervention
None
Setting
Length of treatment
(1) 3 months
(2) 8 weeks
Length of follow-up
(1) None
(2) 6 months
118
Number of
studies/participants
Forest plot
Number of
studies/participants
Forest plot
Quality of evidence
Quality of evidence
Dichotomous data
Psych 03.01
Forest plot
Clinician-rated effect
size at follow-up 1
(K 1; n 64)
(K 1; n 64)
Number of
studies/participants
Psych 03.02
Very low
Moderate
SMD 0.07
(0.42, 0.56)*
SMD 0.01
(0.48, 0.5)
Clinician-rated
effect size
Quality of evidence
MACT
MACT
Depression
Anxiety
Symptom
(K 1; n 70)
Psych 03.05
Psych 03.04
(K 1; n 30)
Psych 03.05
(K 1; n 70)
Moderate
MACT
No with 1 episode
of parasuicide
Very low
WMD 4.71(11.16,
1.74)* (6 months)
Psych 03.04
(K 1; n 28)
Moderate
WMD 3.03
(5.68, 0.38)*
MACT
Psych 03.07
(K 1; n 64)
Very low
SMD 0.17
(0.67, 0.32)
MACT
General
functioning
The systematic search of economic literature identified two studies that assessed the
cost effectiveness of brief psychological interventions for borderline personality
disorder (Byford et al., 2003; Brazier et al., 2006). The study by Byford and
colleagues (2003) evaluated the cost effectiveness of MACT versus treatment as usual
in people with recurrent deliberate self-harm; the study was carried out alongside a
UK-based RCT, which was included in the guideline systematic review of clinical
evidence (TYRER2003). In addition, Brazier and colleagues (2006) conducted a
number of economic analyses exploring the cost effectiveness of various psychological interventions for people with borderline personality disorder. In this context, they
undertook economic modelling to assess the cost effectiveness of MACT versus treatment as usual using data from TYRER2003, derived from the subgroup of people
with borderline personality disorder participating in the trial. Details on the methods
used for the systematic search of the economic literature are described in Chapter 3.
Overview of economic analyses conducted by Byford and colleagues, 2003
Byford and colleagues (2003) assessed the cost effectiveness of MACT versus
treatment as usual in a sample of 397 people with recurrent deliberate self-harm
participating in a UK-based RCT (TYRER2003). The analysis adopted a societal
perspective, considering the costs of all sectors providing services (such as hospital
and community healthcare services, community accommodation services, social and
voluntary services and the criminal justice system), living expenses and productivity
losses. Unit costs were taken from national sources, except hospital costs which were
based on local prices. Outcomes were expressed as the proportion of people with a
repeated episode of self-harm and as QALYs; the latter were generated based on
patient-reported Euro-QoL 5-Dimension (EQ-5D) scores that were converted into
utility scores using tariffs obtained from the general UK population. EQ-5D is a
generic measure of health-related quality of life, covering five dimensions of health:
mobility, self-care, usual activities, pain/discomfort and anxiety/depression (EuroQol Group, 1990). Parasuicide events were recorded using the PHI. The time horizon
of the analysis was 12 months.
Results were presented in the form of incremental cost-effectiveness ratios
(ICERs), which express the difference in total cost divided by the difference in the
measure of effectiveness between interventions examined. The authors conducted
univariate sensitivity analysis on a number of cost parameters, to investigate the
robustness of the results under different values and assumptions. In addition, they
used bootstrapping techniques to generate distributions of costs and clinical outcomes
for the two interventions. Subsequently, they used these distributions in a probabilistic sensitivity analysis, which explored the probability of MACT being more cost
effective than treatment as usual, after taking into account the underlying joint uncertainty characterising the cost and effectiveness parameters. Results of probabilistic
analysis were presented in the form of cost-effectiveness acceptability curves, which
demonstrate the probability of each treatment option being cost effective at different
potential cost-effectiveness thresholds set by decision-makers.
120
5.4
COMPLEMENTARY THERAPIES
5.4.1
Introduction
Evidence search
In order to make recommendations for people with borderline personality disorder the
GDG asked the clinical question:
For people with borderline personality disorder which treatments are associated
with improvement in mental state and quality of life, reduction in self-harm, service
use, and risk-related behaviour, and/or improved social and personal functioning
while minimising harm?
In addition to pharmacological and psychological treatments, the GDG also
considered complementary therapies. All relevant RCTs undertaken in people with a
diagnosis of borderline personality disorder were sought from the citations downloaded in the search as described above. No studies were found (except for those on
omega-3 fatty acids, which are included in Chapter 6); therefore, the GDG contacted
a special advisor who advised on terms for a search string for a further search for
studies of any research design. This search was broadened to search for studies on any
personality disorder. Information about the databases searched and the inclusion/
exclusion criteria used are in Table 15. The GDG looked for evidence on therapies
either available through the NHS or otherwise easily accessible.
5.4.3
Studies considered
No studies were found from the search undertaken. The GDGs special advisor
knew of no studies on the use of complementary therapies in people with a
personality disorder, other than those on the use of omega-3 fatty acids already
identified.
Date searched
Study design
Patient population
Personality disorder
Interventions
Outcomes
See Table 10
125
5.4.5
5.5
5.5.1
5.5.2
RCT evidence
There were six RCTs of individual psychological therapies in the treatment of people
with borderline personality disorder. The studies were all of different therapies,
including CBT (DAVIDSON2006), CAT (CHANEN2008), schema-focused cognitive
therapy (GIESEN-BLOO2006), STEPPS (BLUM2008), transference-focused
128
6 RCTs (708)
Study IDs
(1) BLUM2008
(2) CHANEN2008
(3) CLARKIN2004*
(4) DAVIDSON2006
(5) GIESEN-BLOO2006
(6) MUNROE-BLUM1995
N/% female
(1) 165/81
(2) 78/76
(3) 90/93
(4) 106/82
(5) 88/91
(6) 110/81
(1) 32
(2) 16
(3) 31
(4) 32
(5) 31
(6) 1862
(1) STEPPS
(2) CAT
(3) Transference-focused psychotherapy
(4) CBT
(5) Schema-focused therapy
(6) Individual dynamic psychotherapy
Comparator(s)
(1) TAU
(2) Good clinical care (manualised intervention)
(3) DBT/supportive psychotherapy
(4) TAU
(5) Transference-focused psychotherapy
(6) Interpersonal group therapy
Setting
(1)(2) Outpatients
(3)(4) Mixed sample
(5) Outpatients
(6) Mixed sample
(1)(2) 1 year
(3) None
(4) 24 months
(5) 24 and 36 months
(6) None
(K 2;
n 236)
Psych 02.02
SMD 0.15
(0.54, 0.24)*
(24 months)
Moderate
(K 1;
n 101)
(K 1;
n 99)
Psych 02.01
SMD 0.18
(0.57, 0.21)
(24 months)
Very low
(K 1;
n 101)
Psych 02.01
Number of
studies/
participants
Forest plot
Clinician-rated
effect size
at follow-up 1
Quality of
evidence
Number of
studies/
participants
Forest plot
Very low
Moderate
Quality of
evidence
Psych 02.02
(Self-report)
SMD 0.29
SMD 0.18 (0.64, 0.07)
(0.44, 0.07)*
SMD 0.03
(0.43, 0.36)
Clinician-rated
effect size
Psych 02.03
(K 1;
n 124)
Very low
STEPPS
CBT
STEPPS
CBT
Impulsiveness
Therapy
(all versus
TAU unless
otherwise
stated)
Depression
Anxiety
Symptom
Psych 02.04
(K 1;
n 101)
Moderate
SMD 0.12
(0.51, 0.27)*
(24 months)
Psych 02.04
(K 2;
n 223)
Very low
SMD 0.18
(0.45, 0.08)*
CBT
STEPPS
Mental
distress
Psych 02.09
(K 1;
n 78)
Very low
WMD 0.27
(2.39, 1.85)
(24 months)
Psych 02.09
(K 1;
n 124)
Very low
SMD 0.45
(0.81, 0.1)*
STEPPS
CAT (follow-up
only)
Borderline
personality
disorder
symptoms
Psych 02.10
(K 1;
n 101)
Moderate
SMD 0.14
(0.26, 0.53)
Psych 02.10
(K 1;
n 99)
Moderate
SMD 0
(0.39, 0.39)
CBT
STEPPS
Social
functioning
Quality of
life
Leaving
treatment
early because of
side effects
Psych 02.11
(K 1;
n 78)
Very low
SMD 0.22
(0.66, 0.23)
Psych 02.11
(K 1;
n 123)
Moderate
Psych 02.12
(K 1;
n 101)
Very low
SMD 0.23
(0.62, 0.16)*
(24 months)
Psych 02.12
(K 1;
n 99)
Very low
Psych 02.13
(K 3;
n 357)
Very low
RR 1.28
(0.82, 1.99)
(39% versus 28%)
STEPPS
Schema-focused CAT
CAT (follow-up therapy versus
CBT
only)
psychodynamic STEPPS
General
functioning
Table 17: Summary evidence profile for RCTs of individual psychological interventions: general outcomes
5.5.3
Non-RCT evidence
Self-harm
Suicide attempts
Self-harm and
suicide attempts
Therapy
STEPPS
(follow-up only)
CBT STEPPS
(follow-up only)
CAT
Dichotomous
data
RR 0.78
(0.47, 1.27)
(34% versus 44%)
RR 0.81
(0.5, 1.31)
(41% versus 51%)
Quality of
evidence
Very low
Very low
Number of
studies/
participants
(K 1; n 101)
(K 1; n 78)
Forest plot
Psych 02.06
Psych 02.06
RR 1.03
(0.71, 1.48)
(52% versus 51%)
(1 year follow-up)
RR 1.08
(0.53, 2.21)
(23% versus 21%)
(1 year follow-up)
RR 1.8
(0.88, 3.72)
(39% versus 22%)
Quality of
evidence
Very low
Very low
Moderate
Number of
studies/
participants
(K 1; n 108)
(K 1; n 108)
(K 1; n 78)
Forest plot
Psych 02.06
Psych 02.06
Psych 02.06
Follow-up 1
Follow-up 2
RR 0.8
(0.54, 1.2)
(43% versus 54%)
(24 months
follow-up)
RR 0.98
(0.51, 1.87)
(32% versus 32%)
Quality of
evidence
Very low
Very low
Number of
studies/
participants
(K 1; n 101)
(K 1; n 78)
Forest plot
Psych 02.06
Psych 02.06
Continued
133
Self-harm
Suicide attempts
Self-harm and
suicide attempts
WMD 0.41
(0.72, 0.1)
Quality of
evidence
Moderate
Number of
studies/
participants
(K 1; n 101)
Forest plot
Psych 02.05
Follow-up 1
WMD 0.86
(1.82, 0.1)
(24 months)
Quality of
evidence
Moderate
Number of
studies/
participants
(K 1; n 101)
Forest plot
Psych 02.05
Continuous data
cross-sectional survey of views of service users. It is unclear whether the 52 people who
were included in the study represent a complete sample of all those referred to the
programme during the study period. Forty-nine (94%) of the study sample were female.
Scores on the BDI and the Positive and Negative Affect Scale (PANAS) were
monitored every week over a 19-week period. All 52 participants attended at least one
session and 28 (54%) attended ten sessions or more. Repeat means analysis demonstrated statistically significant decreases in negative affects on the PANAS, and reductions on total score on the BDI (equivalent to an effect size of 0.78). At the end of the
programme, 18 (35%) of the 52 participants completed a 14-item cross-sectional
survey that measured the extent to which people would endorse a series of statements.
The mean score on a question about the usefulness of the survey was 2.4. The mean
score on whether, after attending the programme, people say I have fewer problems
was 5.6. Negative effects of the programme were not reported.
BROWN2004
In this uncontrolled cohort study participants with borderline personality disorder
who reported suicidal ideation or engaged in self-injurious behaviour received weekly
134
Admission for
psychiatric reasons
Therapy
CBT
CBT
Effect size
WMD 0.24
(1.98, 1.5)*
WMD 0.44
(1.67, 0.79)*
Quality of evidence
Very low
Very low
Number of studies/
participants
(K 1; n 101)
(K 1; n 101)
Forest plot
Psych 02.07
Psych 02.07
WMD 0.15
(4.26, 3.96)*
WMD 0.67
(1.98, 0.64)*
Quality of evidence
Very low
Very low
Number of studies/
participants
(K 1; n 101)
(K 1; n 101)
Forest plot
Psych 02.07
Psych 02.07
Follow-up at 24 months
* Skewed data.
CBT over a 12-month period and were followed up over an 18-month period.
Individual sessions lasting 1 hour were supplemented by access to emergency telephone contact with an on-call therapist between sessions.
Two-thirds of the study sample were recruited from mental health practitioners in
the public and private sector, with the remainder being recruited by advertisements in
local press or from referrals made by a family member or friend. Of the 44 people who
met study criteria, seven (16%) failed to complete the baseline assessment and five
(11%) declined to participate in the study; the remaining 32 (73%) formed the study
sample. Of these, 28 (88%) were female and 11 (34%) were in full-time employment.
In addition to borderline personality disorder, study participants usually met diagnostic
criteria for other mental disorders. Twenty-five (78%) had a major depressive disorder,
13 (41%) had an eating disorder and 23 (72%) met criteria for at least one other personality disorder. Participants attended between 3 and 63 sessions, with a mean of 34.
Information on the extent of use of telephone contact with therapists is not provided.
Follow-up assessment comprised number of borderline criteria, suicidal ideation
and behaviour, hopelessness and depression (using the HRSD and the BDI-II)
measured at 6, 12 and 18 months. Twenty-nine (91%) people completed the 12-month
follow-up interview 24 (83%) completed the interview at 18 months. Fourteen (48%)
of the 29 who completed the 12-month follow-up interview, and 4 (28%) of the 24
who completed the 18-month follow-up interview, were judged to still have a
135
(1) 100
(1) 52/94
% participants
(1) 100
with borderline
(2) 44
personality disorder
(1) 32/88
(2) 9/100
N/% female
(1) BLUM2002
(1) 33
Study IDs
CAT
Schema-focused
cognitive therapy
(1) 100
(1) 34
(1) 27/59
(1) RYLE2000
2 non-randomised
trials (64)
IPT
5 non-randomised
trials (242)
Psychodynamic
psychotherapy
(1) 100
(1) 26
(1) 6/100
(1) 33
(2) 30
(3) 25
(4) 30
(5) 31
(1) 23/100
(2) 132/86
(3) 14/100
(4) 30/66
(5) 43/77
(1) 27
(2) not reported
(1) 56/57
(2) 8
STEPPS
2 non-randomised
trials (41)
CBT
(1) Outpatient, US
(2) Outpatient,
Netherlands
Setting
Research design
(1) Outpatient,
UK
(1) Outpatient,
US
(1) 1 year
(1) Outpatient,
Norway
(1) No follow-up
(2) No follow-up
(1) Outpatient,
Italy
(2) US
(1) No follow-up
(2) Not available
(3) No follow-up
(4) 5 years
(5) No follow-up
(1) Outpatient, US
(2) Germany
(3) Outpatient, Mexico
(4) Australia
(5) Inpatient followed
by outpatient, Norway
There is very little evidence for the efficacy of individual psychological interventions in
the treatment of people with borderline personality disorder because almost all studies
are uncontrolled. The RCT evidence showed some weak evidence that CAT (in young
people) and STEPPS may help to improve general functioning, and reduce self-harm
and suicide. The effect size for self-harm and suicide outcome was not quite statistically
significant for CAT, which was compared with a manualised treatment and good clinical practice. Other outcomes from the studies of CAT and STEPPS, and outcomes
from RCTs of other therapies (CBT, schema-focused psychotherapy and individual
dynamic psychotherapy), did not show any benefit of treatment. Data from the study of
transference-focused psychotherapy were not extractable so effect sizes could not be
calculated and the study was excluded from the analysis. It should also be noted that the
studies had few outcomes in common making the dataset as a whole hard to evaluate.
The non-RCT evidence suggests that individual psychological interventions are
acceptable to people with borderline personality disorder. They showed generally
positive outcomes (based on authors conclusions from statistical significance testing
rather than calculating effect sizes from extracted data), which need to be tested
against control conditions in randomised trials before firm conclusions about the efficacy of these treatments can be drawn.
5.5.5
The systematic search of economic literature identified three studies that assessed the
cost effectiveness of individual psychological interventions for borderline personality
141
5.6
COMBINATION THERAPY
5.6.1
Studies reviewed
5.6.2
BELLINO2006B
This a 24-week trial comparing fluoxetine with a combination of fluoxetine plus IPT
in 39 outpatients (62% women). All patients had comorbid major depressive disorder
and baseline HRSD scores indicate moderate depression at the start of the study. The
fluoxetine group received clinical management, although there is no description of
what this involved. The number leaving the study early and the number completing
the trial do not correspond.10 The authors concluded that combination therapy was
more effective.
The study authors reported outcomes for anxiety, depression and quality of life.
For quality of life, the subscales of the Satisfaction Profile (SAT-P) were reported
separately because a significant result was found on only two of the subscales
(psychological and social functioning). Combination treatment was more effective in
reducing depression symptoms (clinician-rated only) and psychological and social
functioning aspects of the quality-of-life measure used (self-rated). See Table 22 and
Table 23 for the summary evidence profiles. Despite this limited dataset it is likely
that quality of life improves for service users as specific symptoms (such as depression, aggression and anxiety) improve.
5.6.3
BELLINO2007
This is a 24-week trial comparing a combination of fluoxetine plus IPT with a combination of fluoxetine plus CT in 35 outpatients (73% women). All patients had comorbid major depressive disorder and baseline HRSD scores indicate moderate to severe
depression at the start of the study.
The study authors reported outcomes for anxiety, depression and quality of life.
There was evidence that fluoxetine plus CT improved social functioning compared
with fluoxetine plus IPT. All other outcomes were inconclusive, probably because of
the low numbers of participants in the study.
See Table 24 and Table 25 for the summary evidence profiles.
10Clarification
145
146
BELLINO2006B
39/62
26
100% major
depressive disorder
Outpatients
6 months
None
Study IDs
N/% female
Setting
Length of treatment
Length of follow-up
Notes
1 RCT (39)
Fluoxetine IPT
versus fluoxetine
None
6 months
Outpatients
100% major
depressive disorder
30
35/73
BELLINO2007
1 RCT (35)
Fluoxetine IPT
versus fluoxetine
versus CT
None
12 weeks
Partial hospitalisation
25
90/76
SIMPSON2004
1 RCT (90)
Fluoxetine DBT
versus placebo DBT
Allowed to continue
existing medication
(benzodiazepines,
antidepressants, mood
stabilisers) up to 80%
did so
None
12 weeks
Outpatients
27
60/87
SOLER2005
1 RCT (60)
Olanzapine DBT
versus placebo DBT
(K 1;
n 32)
Forest plot
Number of (K 1;
studies/
n 32)
participants
Combo 04.01
(K 1;
n 34)
Very low
Very low
Evidence
quality
Moderate
Depression
(self-rated)
Effect size
Depression
(clinicianrated)
Anxiety
(clinicianrated)
Psychological
Sleep, food,
free time
Social
functioning
Work
(K 1;
n 32)
Moderate
(K 1;
n 32)
Very low
(K 1;
n 32)
Moderate
(K 1;
n 32)
Very low
Combo 06.01
(K 1;
n 32)
Very low
QOL:
Physical
Table 22: Summary evidence profile for efficacy evidence for fluoxetine + IPT versus fluoxetine
Outcome
147
Leaving treatment
early for any reason
Leaving treatment
early because of
side effects
Effect size
RD 0.04
(0.2, 0.28)
20% versus 16%
RD 0
(0.09, 0.09)
0% versus 0%
RD 0
(0.09, 0.09)
0% versus 0%
Evidence
quality
Very low
Very low
Very low
Number of
studies/
participants
(K 1; n 39)
(K 1; n 39)
(K 1; n 39)
Forest plot
Pharm 09.01
Pharm 10.01
Pharm 10.01
5.6.4
SIMPSON2004
This is a 12-week placebo-controlled trial of fluoxetine in 25 women with a comorbid
axis I disorder (major depressive disorder [60%] and/or PTSD [44%]). All patients were
in a day hospital (partial hospitalisation) and received DBT. It is unclear how data from
participants not completing the trial were dealt with.
The trial reported outcomes for aggression, anger, anxiety, depression, global
functioning, self-injury and suicidality. There was no evidence for efficacy of either
arm of the trial on any outcome measure.
See Table 26 and Table 27 for the evidence summary profiles.
5.6.5
SOLER2005
This is a 12-week trial comparing a combination of olanzapine plus DBT with a
combination of placebo plus DBT. There were 60 participants (87% women) all with
borderline personality disorder. The DBT offered was delivered in weekly 150minute group sessions and was adapted from the standard version (not referenced)
in which two of the four types of intervention were applied: skills training and telephone calls. The precise setting of the trial is unclear. Those with an unstable axis I
disorder were excluded from the trial at baseline. There were pre-treatment differences between the groups on anxiety scores, so baseline anxiety scores were used as
a covariate in an ANCOVA analysis (analysis of covariance) which found a significant decrease in anxiety in those taking olanzapine. For these participants there was
148
149
(K 1;
n 26)
(K 1;
n 26)
Forest plot
(K 1;
n 26)
(K 1;
n 26)
Very low
Number of
studies/
participants
Very low
Very low
Very low
Evidence
quality
QOL:
Physical
Depression
(self-rated)
Effect size
Depression
(clinicianrated)
Anxiety
(clinicianrated)
Outcome
Combo 06.01
(K 1;
n 26)
Very low
SMD 0.5
(1.28, 0.29)
Psychological
Combo 06.01
(K 1;
n 26)
Very low
SMD 0.02
(0.79, 0.75)
Sleep, food,
free time
(K 1;
n 26)
Very low
SMD 0.75
(0.05, 1.55)
Work
(K 1;
n 26)
Moderate
SMD 1.06
(0.22, 1.89)
Social
functioning
Table 24: Summary evidence profile for efficacy evidence for fluoxetine IPT versus fluoxetine CT
Effect size
Evidence quality
Very low
Number of studies/participants
(K 1; n 32)
Forest plot
Pharm 09.01
Clinical summary
There are few studies comparing the effects of adding a drug to a psychological therapy on symptoms of borderline personality disorder. Consequently the evidence for
an effect is weak. There was no evidence of an effect on symptoms of adding fluoxetine or olanzapine to DBT. However, adding IPT to fluoxetine showed some efficacy
(compared with fluoxetine alone) in reducing depression symptoms (clinician-rated
measure only), and psychological and social functioning aspects of the quality-of-life
measure used (self-rated measures). However, the number of participants in this latter
trial is very low (n 25) and therefore further research is needed to replicate this
finding. In the trial comparing IPT with CT, the effect of treatment on outcomes was
inconclusive, other than for social functioning where CT improved scores more than
IPT. However, this trial is also very small.
The evidence does not support any recommendations specifically about the
combined use of psychotropic medication and a psychological therapy in the treatment of borderline personality disorder.
5.6.7
150
Combo 02.01
Forest plot
(K 1;
n 20)
(K 1;
n 20)
Number of
studies/
participants
Combo 01.01
Very low
Very low
Evidence
quality
Combo 03.01
(K 1;
n 20)
Very low
Anxiety
(clinicianrated)
Effect size
Aggression
(clinicianrated)
Anger
(clinicianrated)
Outcome
Combo 04.01
(K 1;
n 20)
Very low
SMD 0.76
(0.16, 1.68)*
Depression
(self-rated)
Combo 04.02
(K 1;
n 20)
Very low
SMD 0.06
(0.82, 0.94)
Global
functioning
Combo 07.01
(K 1;
n 20)
Very low
SMD 0.03
(0.85, 0.92)*
Self-injury
subscale of
OAS
Table 26: Summary evidence profile for fluoxetine DBT versus placebo DBT
Combo 07.01
(K 1;
n 20)
Very low
SMD 0.44
(0.46, 1.33)*
Suicidality
subscale of
OAS
151
Effect size
RD 0.1
(0.22, 0.41)
25% versus 15%
RD 0
(0.14, 0.14)
0% versus 0%
RD 0
(0.14, 0.14)
0% versus 0%
Evidence
quality
Very low
Very low
Very low
(K 1; n 25)
(K 1; n 25)
Forest plot
Combo 10.01
Combo 11.01
Combo 09.01
Anxiety
Depression
(clinician-rated)
Self-harm/
Service use
suicide attempts
Effect size
SMD 0.23
(0.74, 0.28)
SMD 0.35
(0.86, 0.16)
SMD 0.15
(0.36, 0.65)
SMD 0.04
(0.08, 0.16)
Evidence
quality
Very low
Very low
Very low
Moderate
Number of
studies/
participants
(K 1; n 60) (K 1; n 60)
(K 1; n 60)
(K 1; n 60)
Forest plot
Combo 03.01
Combo 07.01
Combo 08.01
Combo 04.02
Weight gain
Effect size
RD 0 (0.06, 0.06) 0%
versus 0%
WMD 2.79
(1.36, 4.22)
Evidence quality
Very low
Moderate
Number of
studies/participants
(K 1; n 60)
(K 1; n 60)
Forest plot
Combo 11.02
Combo 12.01
152
5.7
5.7.1
RCT evidence
The majority of the RCTs of psychological therapy programmes were of DBT, with
one trial of MBT/partial hospitalisation.
Dialectical behaviour therapy (DBT)
Nine RCTs of DBT met inclusion criteria with two being excluded (see
Appendix 16). Trials all followed the manualised treatment designed by Linehan
(1993), although several modified it. In two trials this was for substance-dependent
populations (LINEHAN1999, 2002) and these trials were not included in the main
review of RCTs because these populations are outside the scope of the guideline.
However, since substance misuse and dependence are important issues in the treatment of people with borderline personality disorder, the studies are discussed in the
narrative.
There was a range of patient populations represented in the included trials: outpatients (CLARKIN2004, LINEHAN1991, VANDENBOSCH2002); primary care
(KOONS2001); and referrals to a community mental health outpatient clinic following
emergency department treatment for a suicide attempt (TURNER2000). CLARKIN2004
was a three-armed trial of DBT, transference-focused psychotherapy and modified
psychodynamic supportive psychotherapy, but included no extractable data. Data from
CLARKIN2004 were supplied by study authors since no extractable data were available in the published reports. The data supplied were estimated mean endpoint data
calculated from ordinary least squares regression based on the origin and slope of each
participant assuming 12 months treatment. The primary outcome of the study was the
rate of change on each outcome for each therapy separately. The authors refused
permission to use thier data to calculate effect sizes to make comparisons with other
studies. Therefore this study could not be considered further (see section 5.5.2). In addition the study had no treatment-as-usual arm and data were given for only 61 of the total
90 participants randomised. Further details of the included studies (including the two in
substance-dependent populations) are in Table 30.
Mentalisation-based therapy (MBT) and day hospital treatment
One trial reported a treatment combining MBT with day hospital treatment
(BATEMAN1999). See Table 31 for study characteristics.
Evidence profile for psychological therapy programmes
A wide range of outcomes were reported, which also included some follow-up data.
The summary evidence profiles are in the tables below.
Compared with treatment as usual, psychological therapy programmes showed
some effect on anxiety, depression and symptoms of borderline personality disorder,
although the evidence quality was moderate. These interventions also retained people
in treatment compared with treatment as usual. People with borderline personality
disorder also reported better employment outcomes (number of years in employment)
following a psychological therapy programme (specifically MBT with partial hospitalisation) at 5-year follow-up.
154
155
76
90
28
63
Study ID
CARTER
unpublished
CLARKIN2004
KOONS2001
LINEHAN1991
Borderline
personality
disorder and
parasuicidal
Borderline
personality
disorder
(women
veterans)
Borderline
personality
disorder
Borderline
personality
disorder
Population
Standard
Standard
Standard
Modified but
modification
unclear
Standard
DBT or
adapted?
1 year
6 months
1 year
1 year but
outcomes
taken at
6 months
Length of
treatment
protocol
Yes
Yes
Yes
Yes
Manualised?
Weekly
(individual
and group)
Weekly
(individual
and group)
Weekly
(individual
and group)
Weekly
(individual
and group)
Number
of
sessions
Yes
Yes
Yes
Not
reported
Therapist
experienced?
TAU
TAU
(1) Transferencefocused
psychotherapy
(2) Supportive
psychotherapy
Waitlist
Comparator
Referral to
other therapy
Weekly
individual
therapy
at discretion
of therapist plus
supportive/
psychoeducational groups
(1) Structured
2 weekly
sessions
(2) 1 or 2
weekly sessions
N/A
Comparator
details
Continued
Medication
tapered off
Medication
as needed
Other
interventions
24
64
TURNER2000
VAN DEN
BOSCH2002
trial.
101
LINEHAN2006
3-armed
Study ID
Modified to
include
psychodynamic
techniques and
skills training
in individual
sessions
Standard
Standard
DBT or
adapted?
Borderline
Standard
personality
disorder
(women with/
without
substance
misuse)
Borderline
personality
disorder
Borderline
personality
disorder and
self-harm
Population
1 year
1 year
1 year
Length of
treatment
protocol
Yes
Yes
Yes
Manualised?
Weekly
(individual
and group)
Weekly or
twice weekly
(between 49
and 84
sessions)
Weekly
(individual
and group)
Number
of
sessions
Therapist
experienced?
TAU
Client-centred
therapy
Community
treatment
by experts
Comparator
Other
interventions
Ongoing
outpatient
treatment
from original
referral source
2 weekly;
Drugs as
emphasises
needed
patients
sense of
aloneness
and provides
supportive
atmosphere for
individuation 1) increased
support during
crises, 2) problem
assessment,
3) supportive
treatment, and
4) termination
1 session per
week; similar
to TAU, so
treatment
uncontrolled,
but therapist
characteristics
controlled for
Comparator
details
1 RCT (44)
Study IDs
BATEMAN1999
N/% female
44/50
32
Comparator
Standard care
Setting
Day hospital
Length of treatment
18 months
Length of follow-up
5 years
Psychological therapy programmes also showed some benefit on the rate of selfharm and suicidal ideation, with benefits persisting at follow-up (measured at 5 years
for MBT with partial hospitalisation only). See Table 33. One study of DBT (in
opiate-dependent participants), LINEHAN2002, did not provide extractable data in
the paper, although reported no effect of treatment on parasuicide rates of treatment
(measured using PHI).
Psychological therapy programmes also had some benefit on service-use
outcomes such as hospital admissions and emergency department visits. MBT with
partial hospitalisation also reduced the amount of psychiatric outpatient treatment
required and the number of years on three or more drugs at 5-year follow-up (see
Table 34).
There was some benefit for psychological therapy programmes on social functioning outcomes on employment performance, but not on other outcomes (see Table 35).
Psychological therapy programmes in people with borderline personality disorder and
substance dependence
In addition to the RCT evidence of psychological therapy programmes in people with
a diagnosis of borderline personality disorder, two RCTs reported DBT in people
with comorbid substance dependence (LINEHAN1999, 2002). These reported a
range of drug-related outcomes. DBT helped to improve the proportion of days abstinent from drugs and alcohol (at endpoint and 16-month follow-up), but did not
increase the proportion of people with clean urinalyses or self-reported days abstinent
from heroin.
157
(K 1; n 38)
Psych 01.02
SMD 3.49
(4.63, 2.36)
(18 months)
(K 1; n 19)
Psych 01.01
SMD 0.91
(1.99, 0.18)
(12 months)
Number of
studies/
participants
Forest plot
SMD 0.59
(1.52, 0.35)
(24 months)
Psych 01.01
Forest plot
Clinician-rated
effect size at
follow-up 2
(K 1; n 33)
(K 1; n 15)
Number of
studies/
participants
Psych 01.02
Moderate
Moderate
Quality of
evidence
Clinician-rated
effect size at
follow-up 1
Moderate
Very low
SMD 1.22
(1.92, 0.52)
SMD 0.59
(1.52, 0.35)
Clinician-rated
effect size
Quality of
evidence
DBT (MBT at
follow-up)
DBT
Therapy
Anxiety
Anger
Symptom
Psych 01.04
(K 3; n 133)
Moderate
SMD 0.57
(0.92, 0.22)*
DBT (MBT
for self-rated)
Depression
Psych 01.9
(K 1; n 36)
Very low
SMD 2.09
(2.93, 1.25)
(18 months)
Psych 01.9
(K 1; n 38)
Very low
SMD 0.39
(1.03, 0.26)
MBT
Mental
distress
SMD 9.6
(12.83, 6.38)*
(5 years)
Psych 01.12
(K 1; n 20)
Moderate
SMD 0.6
(2.34, 1.14)*
DBT (MBT at
follow-up)
Borderline
personality
disorder
symptoms
WMD 2
(3.29, 0.71)*
(5 years)
MBT
Employment
related (no.
years
employment)
SMD 0.74
(1.38, 0.1)
(5 years)
MBT
General
functioning
Psych 01.16
(K 5; n 294)
Moderate
RR 0.61
(0.43, 0.86)
(23% versus 39%)
DBT MBT
Leaving
treatment early
because of side
effects
Table 32: Summary evidence profile for psychological therapy programmes versus treatment as usual: general outcomes
Number of
studies/
participants
Forest plot
Self-rated effect
size at follow-up
Quality of
evidence
Number of
studies/
participants
Forest plot
(K 1; n 38)
Psych 01.06
SMD 1.15
(1.85, 0.45)
(18 months)
Moderate
Psych 01.05
(K 3; n 82)
(K 1; n 24)
Psych 01.03
Moderate
Moderate
SMD 1.49
(1.99, 0.99)*
SMD 0.7
(1.53, 0.13)*
Psych 01.12
(K 1; n 41)
Moderate
Psych 01.14
(K 1; n 41)
Moderate
Psych 01.15
(K 1; n 41)
Moderate
Quality of
evidence
Self-rated
effect size
Psych 01.01
Forest plot
(K 1; n 19)
Number of
studies/
participants
Very low
Quality of
evidence
Quality of
evidence
Number of
studies/
participants
Forest plot
Psych 01.07
Forest plot
Continuous data
effect sizes at
follow-up 1
(K 2; n 44)
(K 3; n 185)
Number of
studies/
participants
Psych 01.07
Very low
Moderate
WMD (random
effects) 2.50
(6.63, 1.62)*
WMD 0.17
(2.15, 1.82)*
Continuous data
effect sizes
Quality of
evidence
DBT
DBT
Therapy
Self-harm
and suicidal acts
reported together
Self-harm
Outcome
Psych 01.07
(K 1; n 44)
Very low
WMD 0.2
(0.55, 0.15)*
DBT
Self-harm
with suicidal
intent
Psych 01.07
(K 2; n 44)
Moderate
SMD 1.04
(1.68, 0.4)*
DBT
Beck suicidal
ideation scale
Psych 01.07
(K 1; n 41)
(K 1; n 41)
Psych 01.07
Moderate
SMD 1.4
(2.09, 0.7)*
(5 years)
MBT
Moderate
SMD 0.63
(1.26, 0)*
(5 years)
MBT
Suicide attempts
Table 33: Summary evidence profile for psychological therapy programmes versus treatment as usual: self-harm and
suicide-related outcomes
Number of
studies/
participants
Forest plot
Quality of
evidence
Psych 01.8
Forest plot
Dichotomous data
at follow-up 1
(K 2; n 96)
Number of
studies/
participants
Moderate
RR = 0.54
(0.34, 0.86)
(33% versus 58%)
Dichotomous data
effect sizes
Quality of
evidence
DBT, MBT
Therapy
(K 1; n 41)
Psych 01.8
RR 0.31 (0.14,
0.7) (23% versus
74%) (5 years)
Moderate
Psych 01.8
(K 4; n 260)
Moderate
RR (random effects)
= 0.37 (0.16, 0.87)
(15% versus 37%)
Forest plot
Quality of evidence
Moderate
WMD 5.63
(8.23, 3.03)
(5 years)
Continuous data at
follow-up 2
Forest plot
Number of studies/
participants
DBT
Emergency
department visits
for suicide
ideation (endpoint)
Quality of evidence
Number of studies/
participants
Continuous data at
follow-up 1
Quality of evidence
DBT
Therapy
Continuous
data effect sizes
Emergency
department visits
for psychiatric
reasons
Outcome
Moderate
WMD 5.93
(8.47, 3.39)*
(5 years)
(K 1; n 37)
Psych 01.11
WMD 0.45
(0.57, 0.33)
(24 months)*
Moderate
Psych 01.11
(K 3; n 136)
DBT
Hospital
admission for
suicidal ideation
Very low
WMD (random
effects) 5.42
(14.01, 3.17)*
DBT
Hospital
admission
for psychiatric
reasons
Psych 01.11
(K 1; n 73)
Moderate
WMD 0.72
(1.97, 0.53)*
DBT
Hospital
admission
for self-harm
MBT
No. on
medication
at endpoint
MBT
No. years on
three or more
drugs (5-year
follow-up)
Moderate
Moderate
WMD 1.6
WMD 1.7
(2.64, 0.56)* (2.56, 0.84)*
(5 years)
(5 years)
MBT
No. years
further
psychiatric
outpatient
treatment
Table 34: Summary evidence profile for psychological therapy programmes versus treatment as usual: service-use outcomes
Outcomes are based on the number of participants having at least one visit or admission unless stated
(K 1; n 89)
Psych 01.10
RR 0.63
(0.21, 1.91)
(24 months)
(K 1; n 89)
Psych 01.10
RR 0.65
(0.35, 1.23)
(24 months)
Number of studies/
participants
Forest plot
Psych 01.10
Forest plot
(K 1; n 81)
(K 1; n 81)
Number of studies/
participants
Psych 01.10
Very low
Very low
Quality of evidence
Dichotomous data at
follow-up 1
Moderate
Moderate
RR 0.48
(0.22, 1.04)
Quality of evidence
RR 0.61
(0.42, 0.89)
Psych 01.11
Forest plot
Dichotomous data
effect sizes
(K 1; n 41)
Number of studies/
participants
Psych 01.10
(K 1; n 81)
Very low
RR 1.05
(0.47, 2.32)
(24 months)
Psych 01.10
(K 2; n 162)
Moderate
RR 0.54
(0.32, 0.91)
Psych 01.11
(K 1; n 41)
Psych 01.10
(K 1; n 81)
Very low
RR 0.89
(0.33, 2.41)
(24 months)
Psych 01.10
(K 1; n 89)
Moderate
RR 0.28
(0.11, 0.71)
Psych 01.10
(K 1; n 73)
Very low
RR 0.82
(0.36, 1.89)
Psych 01.10
(K 1; n 38)
Moderate
RR 0.47
(0.25, 0.88)
Psych 01.11
Psych 01.11
(K 1; n 73) (K 1; n 73)
SAS employment
performance
(18 months)
Therapy
DBT
DBT
DBT
SMD 0.71
(1.56, 0.14)
SMD 0.8
(1.4, 0.2)
Moderate
Moderate
Very low
Number of
studies/
participants
(K 1; n 14)
(K 1; n 13) (K 1; n 10)
Forest plot
Psych 01.13
Psych 01.13
Psych 01.13
SMD 0.44
(1.42, 0.54)
SMD 1.04
(1.73, 0.35)
Moderate
Very low
Very low
Number of
studies/
participants
(K 1; n 14)
(K 1; n 13) (K 1; n 8)
Forest plot
Psych 01.13
Psych 01.13
5.7.3
Psych 01.13
(1) ALPER2001
(2) ANDREA unpublished
(3) BARLEY1993
(4) CUNNINGHAM2004
(5) HARLEY2007
(6) LANIUS2003
(7) MCQUILLAN2005
(8) PRENDERGAST2007
N/% female
(1) 15/100
(2) 33
(3) 130/79
(4) 14/100
(5) 49/92
(6) 18/100
(7) 127/81
(8) 11/100
(1) 2242
(2) Not available
(3) 1657
(4) 39
(5) 40
(6) 35
(7) 31
(8) 36
% participants with
borderline personality
disorder
(1)(5) 100
(6) 100 borderline personality disorder and PTSD
(7) 92
(8) 100
Research design
Setting
(1) Inpatients, US
(2) Partial hospitalisation, Netherlands
(3) Inpatients, UK
Continued
165
(1) No follow-up
(2) 18 months
(3)(8) No follow-up
DBT; their responses were uniformly positive. Despite the considerable methodological limitations, the authors main conclusion was that this study provided evidence
that DBT is an effective treatment approach for people diagnosed with borderline
personality disorder.
ANDREA unpublished
This was a non-comparative study of MBT in 33 people with borderline personality disorder. Treatment lasted 18 months and a further 18 months of follow-up data
were collected. The study found that suicide attempts and acts of self-harm were
reduced, as was service use. It also reported improvement in quality of life, depression symptoms, general distress, and social and interpersonal functioning.
BARLEY1993
This paper describes the modification and application of outpatient DBT in an
American inpatient setting. According to the authors, this was the first time that the
use of DBT in an inpatient setting had been described. Most of the paper is a
descriptive account of the treatment programme and underlying theory, however,
some longitudinal data is also presented. Parasuicide rates in a sample of 130
patients admitted to the DBT personality disorder inpatient unit are compared with
those in an unspecified number of patients admitted to a general adult psychiatry
unit that maintained a consistent non-DBT treatment programme over a parallel
43-month period. The median age of patients treated on the DBT unit was 30 years
(range 1657) and 79% were female; their personality status is not described, other
than that they were largely severely parasuicidal borderline patients. No descriptive information is given about the patients who were admitted to the general adult
psychiatry unit. The authors compared the frequency of self-inflicted injuries and
overdoses in three time intervals over the 43-month follow-up period: pre-introduction of DBT (19 months); introduction of DBT (10 months); and a period of active
treatment (14 months). The authors present the results of a one-way ANOVA
(analysis of variance) to show that there was a statistically significant change
( p = 0.007) in the frequency of parasuicide events across the three time periods in
those treated on the DBT unit. There was no statistically significant change in the
166
5.7.4
The RCT evidence for psychological therapy programmes showed some benefit in
reducing symptoms such as anxiety and depression. They also have some benefit on
rates of self-harm. Most of the evidence is of moderate quality, and the majority is of
DBT, with a single study of MBT with partial hospitalisation. The non-RCT evidence
provides support for the feasibility of using DBT in various settings.
5.7.5
The systematic search of economic literature identified two studies assessing the cost
effectiveness of psychological therapy programmes for borderline personality disorder (Brazier et al., 2006; Bateman & Fonagy, 2003). Brazier and colleagues (2006)
conducted a number of economic analyses to explore the cost effectiveness of various
psychological interventions for people with borderline personality disorder. Among
their analyses, four explored the cost effectiveness of DBT and one of MBT. Details
on the overall economic methods adopted by Brazier and colleagues (2006) are
provided in Section 5.3.4. Details on the methods used for the systematic search of
the economic literature are described in Chapter 3.
Dialectical behaviour therapy (DBT)
Brazier and colleagues (2006) conducted four economic analyses to explore the cost
effectiveness of DBT using data from four respective RCTs. All four RCTs have been
included in the systematic review of clinical evidence conducted for this guideline
170
171
5.8
THERAPEUTIC COMMUNITIES
5.8.1
Introduction
5.8.2
Studies considered12
The review team conducted a systematic of primary research studies assessing the
efficacy of residential therapeutic community treatment for people with a diagnosis
of personality disorder. To be included, studies had to provide quantifiable outcome
data and focus on therapeutic communities (rather than inpatient wards based on therapeutic community principles or residential programmes that do not conform to the
principles described above) either in the UK, or in countries with similar healthcare
systems. Evidence for therapeutic communities where residents stay long term were
considered alongside evidence for other highly structured therapy programmes such
as partial hospitalisation and intensive psychotherapy.
Nineteen papers, published in peer-reviewed journals between 1989 and 2007,
met the eligibility criteria, providing data on 2,780 participants. Nine studies were
excluded. See Appendix 16 for details of excluded studies with reasons for exclusion.
Studies of therapeutic communities in the UK (Henderson Hospital, Cassel
Hospital and Francis Dixon Lodge), Australia and Finland were found.
5.8.3
Although the Henderson Hospital closed in April 2008, and the Cassel Hospital has
developed a substantially different programme, they have both been important in
undertaking relevant research. Many other therapeutic communities for borderline
12Here
and elsewhere in the guideline, each study considered for review is referred to by a study ID in capital letters (which denotes the primary author and date of study publication, except where a study is in press
or only submitted for publication, in which case a date is not used).
177
Study
design
Participants
Control
group
Diagnosis
DOLAN1992
95
Cohort
study
All referrals
(admitted
only)
No control
Range of
personality disorder
majority borderline
DOLAN1997
137
Cohort
study
All
referrals
Nonadmitted
patients
Range of
personality disorder
majority
borderline
WARREN2004
and 2006
135
Cohort
study
All
referrals
Nonadmitted
patients
All personality
disorder; 84%
borderline
personality
disorder and
eating disturbances
(unclear if met
diagnosis for an
eating disorder)
178
Outcomes
Findings
Notes
DOLAN1992
GSI
Effect size
calculated
from pre-post
data
DOLAN1997
BPDSI
WARREN2004
EAT-26 scores
MIS hitting
others action
Firesetting
impulse
Overdosing
impulse
180
Diagnosis
Chiesa &
Fonagy (2000)*
90
Prospective
cohort study
Chiesa et al.
(2004a)*
73
Prospective
cohort study
Prospective
cohort study
*A 6-year follow-up study has also been published (Chiesa et al., 2006).
181
Study
design
DAVIES1999 52 Cohort
study
Diagnosis
All
referrals
Emotionally
unstable
personality
disorder (87%)
None (although
some data
given comparing
local patients
with others)
One cohort study was found that examined treatment effectiveness of Francis
Dixon Lodge (see Table 40).
Davies and colleagues (1999) examined 52 patients admitted to Francis Dixon
Lodge, of whom 40 were referrals from Leicestershire and the remaining 12 were
extra-contractual referrals. Comparison of the two samples showed that the latter had
greater service usage costs, as reflected by greater inpatient stays in general psychiatry
wards, in the 3 years preceding treatment at Francis Dixon Lodge, than the referrals
from Leicestershire. No other data were reported.
A follow-up study over a period of 3 years of the same sample (Davies &
Campling, 2003) demonstrated a significant reduction in the number of inpatient
admissions 1 year post-treatment; moreover, these effects were maintained at 3-year
follow-up. Evidence also suggests that those who terminated treatment early (under
42 days) had the poorest outcomes in terms of suicide and accidental death. The
number of days of hospitalisation in the 3 years before admission was compared with
the number post-admission, showing fewer days of hospitalisation post-admission
(WMD 46.30; 95% CIs 7.75, 84.85). However, the CIs are wide (between 8 and 85
days) making it hard to draw firm conclusions from these data.
5.8.4
5.8.5
Outside the UK, the term therapeutic community most commonly refers to residential treatment units for addictions, which frequently operate similar programmes to
183
184
185
Clinical summary
Although the cohort studies provide some interesting data, there are a number of
factors that limit their usefulness in evaluating residential therapeutic community
treatment. There would be methodological difficulties with setting up such trials,
including ethical problems associated with withholding residential treatment for those
most in need and the related problem of creating adequate control groups. There are
no RCTs of treatment in therapeutic communities.
Caution must therefore be exercised in drawing conclusions from the cohort studies for five reasons. First, the studies lack meaningful comparison groups; in several
studies all those referred for treatment are included in the study, with those admitted
compared with those not admitted. Admission is based on criteria set by the individual therapeutic community. This is likely to mean that those not admitted are dissimilar in some ways to those admitted, thus weakening the use of this group as a control.
Second, simple comparisons of pre- versus post-treatment changes in outcome for the
residential treatment group are problematic because there is a possibility that changes
may be because of spontaneous recovery or some systematic bias in the selection of
those who entered residential treatment. For example, admittance to the Henderson
Hospital depended partly on availability of funding from the local health authority,
and so it is possible that districts with less available funding either have alternative
non-residential treatment programmes for those with personality disorders or have
fewer resources for other reasons. This may reduce the generalisability of the available data further. Third, many of the studies examined follow-up patients over a
relatively short period of time (for example, 1 year). Fourth, the necessarily multicomponent nature of many the therapeutic community programmes makes it difficult
to identify the active components. For example, it is unclear whether admitting an
individual into a hospital, the nature of the hospital environment, the therapeutic
relationships with staff or other patients, the use of psychotropic medication, or a
combination of these factors, contribute to the effectiveness of the treatment. Lastly,
the number of residentially-based communities is being reduced (for example, the
Henderson Hospital has closed) and while several new non-residential community
treatment programmes have been established, there is as yet no evidence on their
effectiveness.
Consideration of these limitations means that conclusions about the efficacy of
therapeutic community treatment remain tentative.
5.8.7
The systematic search of the literature identified two economic studies on therapeutic communities that met the criteria for inclusion in the review of economic
evidence. Both studies were conducted in the UK. One study had a before-after
design and examined costs associated with treatment of people with personality
disorders at the Henderson Hospital (Dolan et al., 1996); the other was a cohort
study examining two programmes for people with personality disorders at the Cassel
186
5.9
DATA BY OUTCOME
5.9.1
Introduction
In this section, the outcomes analysed from RCTs are reported by outcome rather than
by therapy. It does not include data from combination trials.
188
DBT
Quality of evidence
Moderate
Number of studies/participants
(K 1; n 26)
Forest plot
Psych 01.01
Quality of evidence
Moderate
Number of studies/participants
(K 1; n 15)
Forest plot
Psych 01.01
Quality of evidence
Very low
Number of studies/participants
(K 1; n 19)
Forest plot
Psych 01.01
5.9.2
Measures of anger were reported in one study (LINEHAN1991) (see Table 41). This
showed some effect of treatment (DBT) on anger which was sustained at 1-year
follow-up but not at 2 years. However, the sample size was very small (n 26)
(smaller at follow-up) so the effect on symptoms is far from certain.
5.9.3
STAI
HADS
BAI
SMD 4.66
(9.81, 0.49)*
Quality of
evidence
Moderate
Very low
Moderate
Very low
Number of
studies/
participants
(K 1;
n 20)
(K 2;
n 137)
(K 1;
n 64)
(K 1;
n 24)
Forest plot
Psych 06.01
Psych 06.01
Psych 06.01
Psych 06.02
Clinician-rated
effect size at
follow-up 1
(18 months)
SMD 3.49
(4.63, 2.36)
Quality
of evidence
Moderate
Number of
studies/
participants
(K 1;
n 33)
Forest plot
Psych 06.01
Clinician-rated
effect size at
follow-up 2
(24 months)
SMD 0.18
(0.57, 0.21)
K 1;
n 101
Number of
studies/
participants
Quality
of evidence
Very low
Forest plot
Psych 06.01
190
Measures of depression were reported in six studies (see Table 43). There was an
effect on symptoms for both clinician-rated and self-rated measures, which persisted
at follow-up (both 18 and 24 months) although only a single study provided followup data (for MBT with partial hospitalisation).
5.9.5
Quality of evidence
Moderate
Number of studies/participants
(K 4; n 197)
Forest plot
Psych 07.01
Quality of evidence
Moderate
Number of studies/participants
(K 5; n 318)
Forest plot
Psych 07.02
Quality of evidence
Moderate
Number of studies/participants
(K 1; n 38)
Forest plot
Psych 07.02
Quality of evidence
Very low
Number of studies/participants
(K 1; n 101)
Forest plot
Psych 07.02
191
5.9.6
Quality of evidence
Very low
Number of studies/participants
(K 1; n 124)
Forest plot
Psych 08.01
Quality of evidence
High
Number of studies/participants
(K 3; n 261)
Forest plot
Psych 09.01
5.9.7
(K 2; n 145)
Psych 10.01
WMD 0.47
(0.9, 0.04)*
(5 years)
(K 3; n 185)
Psych 10.01
WMD 4.71
(11.16, 1.74)*
(6 months)
Number of studies/
participants
Forest plot
RR (random
effects) 0.52
(0.31, 0.89)
(21% versus 39%)
RR 0.54
(0.34, 0.86)
(33% versus 58%)
Quality of evidence
Moderate
Psych 10.01
Psych 10.01
Forest plot
Moderate
(K 1; n 41)
(K 1; n 30)
Number of studies/
participants
Moderate
Very low
Quality of evidence
Effect size at
follow-up 1
High
High
WMD 0.32
(0.55, 0.09)
WMD 0.17
(2.15, 1.82)*
Effect size
continuous
Quality of evidence
Suicide attempts
Self-harm
Outcome
Moderate
RR 0.97
(0.88, 1.07)
(94% versus 97%)
Psych 10.01
(K 1; n 101)
Moderate
WMD 0.86
(1.82, 0.1)*
(24 months)
Psych 10.01
(K 3; n 72)
Moderate
WMD 1.83
(3.07, 0.59)*
Self-harm and
suicide attempts
Table 46: Summary evidence table for self-harm and suicide-related outcomes
Very low
Continued
RR 0.82
(0.36, 1.89)
(21% versus 26%)
Hospital admission
for self-harm
193
194
(K 5; n 361)
Psych 10.02
RR 1.08
(0.53, 2.21)
(23% versus 21%)
1 year
(K 1; n 108)
Psych 10.02
RR 1.03
(0.71, 1.48)
(1 year)
52% versus 51%
Number of studies/
participants
Forest plot
Psych 02.06
Forest plot
Follow-up 2
(K 1; n 108)
(K 1; n 108)
Number of studies/
participants
RR 0.8
(0.54, 1.2)
(43% versus 54%)
24 months
Psych 10.02
Very low
Very low
Quality of evidence
Follow-up 1
Suicide attempts
Self-harm
Outcome
Psych 10.02
(K 1; n 78)
Very low
RR 0.98
(0.51, 1.87)
(32% versus 32%)
24 months
Psych 10.02
(K 1; n 70)
Self-harm and
suicide attempts
Psych 10.02
(K 1; n 73)
Hospital admission
for self-harm
Forest plot
Follow-up 3
Number of studies/
participants
Forest plot
Number of studies/
participants
Quality of evidence
Quality of evidence
(K 1; n 41)
Psych 10.02
RR 0.31
(0.14, 0.7)
(23% versus 26%)
5 years
Moderate
(K 1; n 101)
Psych 10.02
Very low
195
5.9.8
5.9.9
5.9.10
5.9.11
196
(K 2; n 174)
Psych 11.01
WMD 0.67
(1.98, 0.64)*
(24 months)
(K 3; n 136)
Psych 11.01
WMD 0.29
(0.65, 0.07)
(18 months)
Number of studies/
participants
Forest plot
(K 1; n 101)
(K 1; n 15)
Psych 11.01
Number of studies/
participants
Forest plot
Psych 11.01
Moderate
Moderate
Quality of evidence
Continuous data at
follow-up 1
Moderate
WMD 0.36
(1.19, 0.46)*
Very low
WMD (random
effects) 5.42
(14.01, 3.17)*
Continuous data
effect sizes
Hospital
admission for
psychiatric
reasons
Quality of evidence
No days
hospitalised
Outcome
Hospital
admission for
suicidal
ideation
Psych 11.01
(K 1; n 73)
Very low
WMD 4.38
(17.31, 8.55)
Hospital
admission for
self-harm
Psych 11.02
(K 1; n 101)
Very low
WMD 0.15
(4.26, 3.96)*
(24 months)
Psych 11.02
(K 1; n 101)
Very low
WMD 0.24
(1.98, 1.5)*
Emergency
department
visits (any
reason)
Psych 11.01
(K 1; n 41)
Moderate
WMD 5.63
(8.23, 3.03)*
5 years (presumed
self-harm related)
Emergency
department
visits for
psychiatric
reasons
Continued
Emergency
department
visits for suicide
ideation (endpoint)
Table 47: Summary evidence table for service-use outcomes (hospital admission and emergency department visits)
(K 1; n 37)
Psych 11.01
WMD 5.93
(8.47, 3.39)*
(5 years)
Number of studies/
participants
Forest plot
(K 1; n 41)
Psych 11.01
Number of studies/
participants
Forest plot
Moderate
Quality of evidence
Continuous data at
follow-up 3
Moderate
WMD 0.45
(0.57, 0.33)*
(24 months)
Continuous data at
follow-up 2
Hospital
admission for
psychiatric
reasons
Quality of evidence
No days
hospitalised
Outcome
Hospital
admission for
suicidal
ideation
Hospital
admission for
self-harm
Psych 11.02
(K 1; n 41)
Moderate
WMD 5.63
(8.23, 3.03)*
(5 years)
Emergency
department
visits (any
reason)
Emergency
department
visits for
psychiatric
reasons
Emergency
department
visits for suicide
ideation (endpoint)
Number of studies/
participants
Forest plot
Quality of evidence
Forest plot
Number of studies/
participants
Dichotomous data at
follow-up 1
Quality of evidence
Dichotomous data
effect sizes
Psych 11.03
(K 1; n 81)
(K 1; n 81)
Psych 11.03
Very low
RR 0.89
(0.33, 2.41)
(15% versus 18%)
(24 months)
RR 1.05
(0.47, 2.32)
(24% versus 23%)
(24 months)
Very low
Psych 11.03
(K 1; n 89)
(K 2; n 162)
Psych 11.03
Moderate
RR 0.28
(0.11, 0.71)
(10% versus 36%)
Very low
RR (random
effects) 0.57
(0.26, 1.24)
(19% versus 35%)
Psych 11.03
(K 1; n 73)
Very low
RR 0.82
(0.36, 1.89)
(21% versus 26%)
Psych 11.03
(K 1; n 81)
Very low
RR 0.65
(0.35, 1.23)
(26% versus 40%)
(24 months)
Psych 11.03
(K 1; n 89)
Moderate
RR 0.61
(0.42, 0.89)
(44% versus 72%)
RR 0.63
(0.21, 1.91)
(11% versus 17%)
(24 months)
Psych 11.03
(K 1; n 89)
Moderate
RR 0.48
(0.22, 1.04)
(16% versus 33%)
No. years of
further psychiatric
outpatient treatment
(5-year follow-up)
No. years on
three or more
drugs (5-year
follow-up)
No. on
medication
at endpoint
WMD 1.7
(2.56, 0.84)*
(5 years)
Quality of
evidence
Moderate
Moderate
Number of
studies/
participants
(K 1; n 41)
(K 1; n 41)
Forest plot
Psych 11.01
Psych 11.01
RR 0.47
(0.25, 0.88)
(37% versus 79%)
Quality of
evidence
Moderate
Number of
studies/
participants
(K 1; n 38)
Forest plot
Psych 11.01
Dichotomous
data effect sizes
5.9.12
200
Forest plot
201
Number of studies/
participants
Forest plot
Quality of evidence
Number of studies/
participants
Quality of evidence
Psych 12.01
(K 1; n 78)
Very low
WMD 0.27
(2.39, 1.85) (24 months)
Psych 12.01
(K 1; n 78)
(K 1; n 41)
Psych 12.01
Very low
Moderate
WMD 0.59
(2.34, 1.16)
(12 months)
SMD 1.79
(2.53, 1.06)*
(5 years)
Psych 12.01
Forest plot
(K 1; n 78)
Psych 12.01
(K 1; n 124)
(K 1; n 20)
Number of studies/
participants
Very low
WMD 0.37
(1.95, 1.21)
SCID-II borderline
personality disorder
Psych 12.01
Moderate
Very low
SMD 0.45
(0.81, 0.1)*
WMD 0.6
(2.34, 1.14)*
Quality of evidence
ZAN-borderline personality
disorder
Table 49: Summary evidence table for borderline personality disorder symptomatology
202
(K 1; n 13)
Psych 13.01
SMD 0.44
(1.42, 0.54)
(K 1; n 14)
Psych 13.01
SMD 0.44
(1.18, 0.3)
Number of studies/participants
Forest plot
(K 1; n 13)
(K 1; n 14)
Psych 13.01
Number of studies/participants
Forest plot
Psych 13.01
Very low
Very low
Quality of evidence
Very low
Moderate
SMD 0.71
(1.56, 0.14)
SMD 0.33
(0.9, 0.24)
Continuous data
effect sizes
Quality of evidence
SAS anxious
rumination
SAS work
performance
Outcome
Psych 13.01
(K 1; n 8)
Moderate
SMD 1.04
(1.73, 0.35)
Psych 13.01
(K 1; n 10)
Moderate
SMD 0.8
(1.4, 0.2)
SAS employment
performance
Psych 13.01
(K 1; n 101)
Moderate
SMD 0.14
(0.26, 0.53)
Psych 13.01
(K 1; n 99)
Moderate
SMD 0
(0.39, 0.39)
SFQ
GAF
GAS
SMD 0.17
(0.67, 0.32)
SMD 0.55
(0.91, 0.19)
Quality of evidence
Very low
Moderate
Number of studies/
participants
(K 1; n 64)
(K 1; n 123)
Forest plot
Psych 14.01
Psych 14.01
SMD 0.74
(1.38, 0.1) (5 years)
Quality of evidence
Moderate
Number of studies/
participants
(K 1; n 41)
Forest plot
Psych 01.15
Quality of evidence
Moderate
Number of studies/participants
(K 1; n 41)
Forest plot
Psych 14.01
5.9.13
Measures of quality of life were reported in two studies (DAVIDSON2006; GIESENBLOO2006). There was no effect on outcome of either treatment compared with
treatment as usual, or when two treatments were compared head-to-head (schemafocused CT versus transference-focused psychotherapy) (see Table 53).
203
EuroQOL
Continuous data
effect sizes
SMD 0.29
(0.11, 0.68)*
Quality of evidence
Very low
Moderate
Number of studies/
participants
(K 1; n 99)
(K 1; n 86)
Forest plot
Psych 16.01
Psych 16.01
SMD 0.23
(0.62, 0.16)*
(24 months)
SMD 2.01
(2.53, 1.49) (32 months)
Quality of evidence
Very low
Moderate
Number of studies/
participants
(K 1; n 101)
(K 1; n 86)
Forest plot
Psych 16.01
Psych 16.01
Continuous data
effect sizes at
follow-up
5.9.14
5.10
The overall evidence base for psychological therapies in the treatment of borderline
personality disorder is relatively poor: there are few studies; low numbers of patients
and therefore low power; multiple outcomes with few in common between studies;
204
Quality of evidence
Very low
Number of studies/participants
(K 8; n 651)
Forest plot
Psych 17.01
and a heterogeneous diagnostic system that makes it hard to target a specific treatment on patients with specific sets of symptoms because the trials may be too all
inclusive. This means that the state of knowledge about the current treatments available is in a development phase rather than one of consolidation. Conclusions are,
therefore, provisional and more and better-designed studies need to be undertaken
before stronger recommendations can be made.
There is some evidence that psychological therapy programmes, specifically DBT
and MBT with partial hospitalisation, are effective in reducing suicide attempts and
self-harm, anger, aggression and depression. MBT with partial hospitalisation also
reduces anxiety and overall borderline personality disorder symptomatology and
improves employment and general functioning. DBT is effective in reducing selfharm in women and therefore should be considered if reducing self-harm is a priority. Otherwise, if a psychological therapy is being considered, it should be delivered in
the formats that the evidence suggests are most likely to be effective. That is, rather than
outpatient therapy being offered in isolation, it should be provided within a structured
programme where the person with borderline personality disorder has other inputs
and access to support between sessions, all provided within a coherent theoretical
framework. In addition, therapists should be properly trained and provided with
adequate supervision.
There is as yet no convincing evidence that the individual psychological therapies
are efficacious, although the non-RCT evidence gives some encouragement to the
search for less intensive interventions. More well-designed RCTs that test whether
individual psychological therapies are effective are needed. Very brief interventions
(less than 3 months) do not appear to be effective in the treatment of borderline
personality disorder.
Research results are typically reported in terms of comparison of group means
before and after treatment. While this gives an indication of the overall treatment
effect, it can mask deterioration in a minority of patients. The possibility that some
individuals have adverse effects during or following psychological interventions
remains. Research trials should report deterioration rates in active treatment and
205
5.11
206
5.12
5.12.1
207
5.12.1.2
5.12.1.3
5.13
RESEARCH RECOMMENDATIONS
5.13.1
208
5.13.2
5.13.3
What are the best outcome measures to assess interventions for people with
borderline personality disorder? This question should be addressed in a three-stage
process using formal consensus methods involving people from a range of backgrounds, including service users, families or carers, clinicians and academics. The
outcomes chosen should be valid and reliable for this patient group, and should
include measures of quality of life, function and symptoms for both service users
and carers.
The three-stage process should include: (1) identifying aspects of quality of life,
functioning and symptoms that are important for service users and families or carers;
(2) matching these to existing outcome measures and highlighting where measures
are lacking; (3) generating a shortlist of relevant outcome measures to avoid multiple
outcome measures being used in future. Where measures are lacking, further work
should be done to develop appropriate outcomes.
209
210
6.
6.1
INTRODUCTION
6.1.1
Current practice
Polypharmacy
Published follow-up studies describing the care received by people with borderline
personality disorder report between 29 and 67% of people studied are taking psychotropic
drugs (median 33%) (Zanarini et al., 2004a). Indeed, many people are taking several
classes of psychotropic drugs simultaneously. For example, in a controlled cohort study
of mental health service utilisation in the US with 6-year follow-up, over 50% of the 264
patients with borderline personality disorder studied were taking two or more drugs
concurrently, over 36% were taking three or more drugs, over 19% were taking four or
more and over 11% were taking five or more at 6 years (Zanarini et al., 2004a).
6.1.2
Participants
The generalisability of clinical trials to clinical populations depends partly on the
clinical characteristics of the participants recruited. For example, participants with
mild illnesses may be recruited because they are more likely to complete a trials
protocol than participants with more severe illness. In trials involving people with
borderline personality disorder there are additional issues. For example, because they
can present with a range of symptoms, studies may selectively recruit those with
specific symptoms that are not always representative of the disorder.
Also, many trials of borderline personality disorder recruit participants through
media advertisements, which may reduce their ability to be representative of those
seen in clinical practice. Zanarini and colleagues in the NIMH whitepaper on guidelines for borderline personality disorder research (Herpertz et al., 2007) have
suggested that such participants (symptomatic volunteers) may be representative of
patients with less severe symptoms found in some areas of clinical practice. However,
this may reflect the different healthcare system in the US and may not be applicable
to the UK. While patients recruited from clinical settings are likely to have serious
psychosocial impairment, high service use without much benefit and are symptomatically severe, those recruited via media advertisements may have less psychosocial
impairment, but still have a history of service use and serious borderline
psychopathology. The former are described as chronically symptomatic or treatmentresistant and the latter as acutely symptomatic. Therefore, the findings of trials that
recruit symptomatic volunteers are likely to be relevant to those with acute symptoms
while those recruiting existing patients may be chronically symptomatic or treatmentresistant. Of course, dichotomising participants like this is artificial since the severity
of symptoms occurs on a spectrum. However, it may help to assess the effectiveness
212
6.1.3
In order to make recommendations about specific drug treatments for people with
borderline personality disorder the GDG asked the clinical question:
For people with borderline personality disorder, which treatments are associated
with improvement in mental state and quality of life, reduction in self-harm, service
use, and risk-related behaviour, and/or improved social and personal functioning
while minimising harm (see Appendix 6)?
The most appropriate research design to answer this is the RCT, and therefore the
evidence base reviewed comprised all available RCTs undertaken in people with a
213
6.1.4
Both published and unpublished studies were sought. The electronic databases
searched are given in Table 55. Details of the search strings used are in Appendix 7.
Date searched
Update searches
Study design
RCT
Population
People with a diagnosis of borderline personality disorder according to DSM or similar criteria
Treatments
Outcomes
See Table 59
214
6.1.5
Outcomes
6.1.6
Since both publication bias and bias because of study funding can affect the conclusions of a review, attempts were made to explore both sources of bias.
Publication bias
There were too few studies to undertake funnel plots to ascertain publication bias so
this could not be explored. However, unpublished studies were sought and included
where possible. Since no drug has specific marketing approval for borderline personality disorder there may be unpublished studies in which a drug marketed for another
disorder has been tested in people with borderline personality disorder. It is not
known whether licensing has ever been sought for any drug specifically for people
with borderline personality disorder.
215
216
Combination trials
trial.
DELAFUENTE1994
FRANKENBURG2002
HOLLANDER2001
HOLLANDER2003
LOEW2006
NICKEL2004
NICKEL2005
TRITT2003
Placebo controlled
3-armed
8 RCTs (422)
Anticonvulsants
ZANARINI 2004
RINNE2002
SIMPSON2004
SOLOFF1989
SOLOFF1993
5 RCTs (306)
Antidepressants
ZANARINI2004
SOLOFF1989
ZANARINI2004
BOGENSCHUTZ2004
ELILILLY#6253
NICKEL2006
PASCUAL2008
SCHULZ2008
SOLER2005
SOLOFF1989
SOLOFF1993
ZANARINI2001
10 RCTs (1111)
Antipsychotics
HALLAHAN2007
(omega-3 fatty acids)
ZANARINI2003
(omega-3 fatty acids)
2 RCTs (79)
Other
Scale
Aggression
217
6.2
6.2.1
Introduction
sizes calculated with Comprehensive Meta-Analysis and entered into RevMan using the generic
inverse variance method to generate forest plots.
218
Overall
evidence
quality
Number of studies/
number of
participants
01 None
02 Pharma
Moderate (K 1; n 52)
Moderate (K 3; n 696)
03 Research body
Moderate (K 3; n 144)
04 Unclear
Very low
Total
Moderate (K 8; n 912)
(K 1; n 20)
03 Research body
Very low
(K 2; n 117)
04 Unclear
Very low
(K 2; n 47)
05 Part-pharma
Very low
(K 1; n 9)
Total
*Random effects.
is small once the effects of mood lability are accounted for (Paris et al., 2007); in
addition some of the association may represent mis-diagnosis. Antimanic drugs
including anticonvulsants and lithium are associated with varying degrees of efficacy in bipolar disorder (NCCMH, 2006) and are therefore often used in the treatment of mood-related symptoms in people with borderline personality disorder
(Frankenburg & Zanarini, 2002).
Impulsive aggression is also a key feature of borderline personality disorder.
Anticonvulsant drugs, mainly carbamazepine and valproate, have a long history of
being used to treat aggression and irritability in a wide range of psychiatric and
neurological conditions. This use was originally based on the theory that episodic
behavioural dyscontrol is a symptom of abnormal CNS neuronal conduction in the
same way as an epileptic seizure is (for example, Lewin & Sumners, 1992).
Anticonvulsant drugs act in a number of ways that may be relevant to the treatment of symptoms of borderline personality disorder. These include stabilisation of
neuronal conduction via voltage-dependent blockade of Na channels, agonist activity
at GABA (an inhibitory neurotransmitter) receptors and antagonist activity at glutamate (an excitatory neurotransmitter) receptors. Glutamate antagonists may have
anti-manic and anti-panic effects, and GABA agonists are known to be anxiolytic.
219
6.2.2
Carbamazepine
220
(1) FRANKENBURG2002
(2) HOLLANDER2001
(3) HOLLANDER2003
DELAFUENTE1994
20/70
32
Specifically excluded
Study IDs
N/% female
Mean age
Axis I/II
disorders
Treatment
(1) Bipolar II
(2) Specifically excluded
(3) Cluster B, intermittent
explosive disorder or PTSD
(1) 27
(2) 39
(3) 40
(1) 30/100
(2) 16/unclear but around 50
(3) 246/31
3 RCTs (292)
Valproate
Carbamazepine
(1) 25
(2) 26
(3) 29
(1) 56/100
(2) 31/100
(3) 44/0
(1) LOEW2006
(2) NICKEL2004
(3) NICKEL2005
3 RCTs (129)
Topiramate
Lamotrigine
Continued
Excluded most
(1) 73% depressive disorders;
major axis I disorders 52% anxiety; 13% obsessivecompulsive disorder (OCD);
63% somatoform disorders
(2)(3) SMI excluded
29
27/100
TRITT2003
1 RCT (27)
Lamotrigine
221
222
Inpatients, Belgium
None
Setting
Length of
treatment
Length of
follow-up
Notes
Atheoretical
psychotherapy
Additional
intervention
Carbamazepine
Lamotrigine
None
(1) 6 months
(2) 10 weeks
(3) 12 weeks
None
8 weeks
Symptomatic
volunteers; Finland
(1)(2) None
None
(3) 17% used an antidepressant;
small number used zolpidem
for sleep problems
Valproate
None
(1) 12 weeks
(2) 8 weeks
(3) 8 weeks
Symptomatic volunteers;
Germany
None
Topiramate
Depression
SMD 0.34
(1.23, 0.54)*
Pharm 06.06
SMD 0.67
(1.57, 0.24)
Forest plot
Pharm 07.07
Forest plot
(K 1; n 20) (K 1; n 20)
Number of
studies/
participants
Pharm 09.02
Very low
Quality of
evidence
Very low
(K 1; n 20)
Number of
studies/
participants
Self-rated
effect size
Very low
Hostility
Quality of
evidence
Symptom
Very low
RD 0.2
(0.08, 0.48)
20% versus 0%
Pharm 13.01
Pharm 15.06
N reporting
side effects
Very low
Pharm 16.05
Pharm 17.05
(K 1; n 20)
Very low
RD 0 (0.17, 0.17) RD 0
0% versus 0%
(0.17, 0.17)
0% versus 0%
Leaving
Leaving treatment
treatment early early because of
side effects
Moderate
SMD 1.27
(0.29, 2.25)
Severe psychopathology
223
6.2.3
Valproate
Valproate is available as sodium valproate and valproic acid (both of which are
licensed only for the treatment of epilepsy) and semisodium valproate (licensed for
the treatment of mania). The active ingredient of all preparations is the same and is
usually referred to as valproate. Valproate is widely prescribed in the treatment of
mania and prophylaxis of bipolar affective disorder. The mechanism of action of
valproate is not understood. It is thought to potentiate GABA pathways (Summary
of Product Characteristics, www.medicines.org.uk). Valproate is a major human
teratogen (for example, Wyszynski et al., 2005) and is not recommended for women
of child-bearing potential (NICE, 2007a).
Studies reviewed
FRANKENBURG2002
This study compared divalproex with placebo in 30 women with borderline personality disorder and comorbid bipolar II disorder. The women were moderately ill with
borderline personality disorder but were euthymic at baseline. There was a high attrition rate (65% versus 60%).
HOLLANDER2001
This was a small study comparing divalproex with placebo in 16 people (about half
were women, but this was unclear because the demographics given for the larger
group initially recruited were not all randomised [n 21]). All the placebo group and
half the divalproex group left treatment early.
HOLLANDER2003
This was a large trial comparing divalproex with placebo in 246 people (96 had
cluster B personality disorder; the rest had intermittent explosive disorder or PTSD).
A relatively large number of participants left treatment early: 47% in the divalproex
group and 45% in the placebo group (cluster B group only).
224
6.2.4
Lamotrigine
Lamotrigine is an anticonvulsant drug that also has some efficacy in the acute treatment
and prophylaxis of depression in the context of bipolar disorder (Calabrese et al., 1999;
Schaffer et al., 2006). It is also used to augment clozapine in treatment-resistant schizophrenia (Tiihonen et al., 2003). Lamotrigine is licensed only for the treatment of epilepsy.
Lamotrigine blocks Na channels and reduced glutaminergic neurotransmission
(Summary of Product Characteristics; www.medicines.org.uk).
Although generally well tolerated, lamotrigine is associated with skin reactions,
some of which are life-threatening, such as Stevens-Johnson syndrome. The risk is
greatest during dosage titration and is increased in people also taking valproate
(Summary of Product Characteristics; www.medicines.org.uk).
Studies reviewed
TRITT2003
This study compared lamotrigine (up to 200 mg) with placebo for anger symptoms in
27 women with a borderline personality disorder diagnosis aged between 20 and 40.
The 8-week study was undertaken in Finland with moderately ill patients recruited
through GP advertisements (symptomatic volunteers). Patients were recruited if they
perceived that the excessive burdens caused by the situations in their lives produced
feelings of constantly increasing anger.
The study found that lamotrigine was statistically significantly more effective on
all five subscales of the STAXI anger expression scale, but other symptoms, such as
affective instability commonly found in association with anger (Weinstein & Jamison,
2007), were not recorded. No significant side effects were reported.
The summary evidence profile is in Table 62.
225
226
Aggression
Pharm 03.01
Forest plot
Pharm 09.02
Pharm 03.02
Forest plot
Pharm 07.07
(K 1; n 9) (K 2; n 39) (K 1; n 30)
Very low
Number of
studies/
participants
Low
SMD 0.15
(0.91, 0.61)
Very low
Hostility
Quality of
evidence
Self-rated
effect size
(K 1;
n 91)
Number of
studies/
participants
Very low
Depression
Quality of
evidence
Symptom
Pharm 15.06
Very low
N reporting
side effects
Pharm 16.05
Very low
WMD 1.04
(0.54, 2.62)
Weight
Pharm 17.05
Very low
Pharm 18.03
(K 1; n 30)
Leaving treatment
early because of
side effects
(K 3; n 292) (K 3; n 292)
RD 0.03
(0.09, 0.14)
47% versus 42%
Leaving
treatment early
Anger
(state
anger)
Leaving
treatment
early
Leaving
N reporting
treatment
side effects
early because
of side effects
Weight
change
Clinicianrated
effect size
Quality
of
evidence
Moderate
Very low
Very low
Moderate
Very low
Number
(K 1;
of studies/ n 27)
participants
(K 1;
n 27)
(K 1;
n 27)
(K 1;
n 36)
(K 1;
n 27)
Pharm 15.06
Pharm 16.05
Pharm 17.05
Pharm 18.03
Comment
One small study showed that lamotrigine is effective in reducing anger symptoms in
people with borderline personality disorder. There is no evidence for its use as a mood
stabiliser in this population. There is no good quality evidence on the acceptability of
lamotrigine, although there is no evidence of an increase in reported side effects.
However, lamotrigine is associated with risks such as skin rashes, although these can
be minimised by titrating the dose gradually. There is insufficient evidence on which
to base a recommendation for the use of lamotrigine in the management of borderline
personality disorder.
6.2.5
Topiramate
Topiramate is an anticonvulsant drug that is licensed for the treatment of epilepsy and
for the prophylaxis of migraine. It has also been used in the treatment of mania (Vieta
et al., 2003) and rapid cycling bipolar disorder (Chen et al., 2005) but is not licensed
for these indications. Topiramate blocks Na channels, increases the activity of GABA
and weakly antagonises the kainate/AMPA subtypes of the glutamate receptor.
It is of note that in RCTs of epilepsy, 5 to 10% of patients randomised to topiramate experienced concentration and/or memory difficulties, depression, nervousness,
mood problems and anxiety (Summary of Product Characteristics; www.medicines.
org.uk). There are also post-marketing reports of treatment-emergent suicidal ideation
and acts (Summary of Product Characteristics; www.medicines.org.uk). It is unknown
if people with borderline personality disorder are particularly vulnerable to these side
effects. Topiramate is associated reliably with weight loss, a side effect that has been
227
229
Anger
(state anger)
Anxiety
Quality of
evidence
Number of
studies/
participants
Forest plot
Pharm 04.01
Forest plot
Self-rated
effect size
(K 1;
n 56)
(K 2;
n 71)
Number of
studies/
participants
Pharm 05.03
Moderate
Moderate
Quality of
evidence
Symptom
Hostility
Pharm 09.02
(K 1;
n 56)
(K 1;
n 56)
Pharm 07.07
Moderate
Moderate
Depression
Pharm 15.06
(K 3;
n 131)
Very low
Pharm 16.05
(K 3;
n 131)
Very low
Weight
Pharm 17.05
(K 2;
n 86)
Very low
Pharm 18.03
(K 3;
n 127)
Very low
RD 0
WMD 4.93
(0.06, 0.06) (20.34, 10.48)
0% versus 0%
RD 0.04 RD 0
(0.13, 0.05) (0.05, 0.05)
4% versus 8% 0% versus 0%
Leaving
treatment
early
ANTIPSYCHOTICS
6.3.1
Introduction
Antipsychotic drugs can be broadly described as fitting into two groups; first-generation (typical antipsychotics) and second-generation (atypical antipsychotics). All are
licensed for the treatment of schizophrenia. Some second-generation antipsychotics
are also licensed for the treatment of mania and prophylaxis of bipolar disorder. Firstgeneration antipsychotics have broader licensed indications than second-generation
antipsychotics; as well as psychosis, these include psychomotor agitation, violent or
dangerously impulsive behaviour and the short-term management of severe anxiety.
Antipsychotics are associated with a wide range of side effects. First-generation
antipsychotics tend to cause more extrapyramidal symptoms and second-generation
antipsychotics more weight gain. It should be noted that licensed indications and the
nature and severity of individual side effects are drug specific. Further information
can be found in the BNF or Summary of Product Characteristics (www.medicines.
org.uk).
Many of the licensed indications for antipsychotics are similar to some of the core
features of borderline personality disorder. In particular, cognitive and perceptual
distortions (such as paranoid ideation, illusions and dissociation), mood symptoms,
irritability and aggression may respond to antipsychotics, although in borderline
personality disorder they tend to be transient symptoms strongly linked to crisis and
mood instability.
Antipsychotic drugs exert their therapeutic effect through dopamine pathways.
Most are D2 antagonists. Some also affect serotonin pathways.
Antipsychotic treatment is sometimes combined with psychological therapy in an
attempt to reduce attrition rates (these data are reviewed in the Chapter 5).
6.3.2
Studies reviewed
Eight placebo-controlled trials and one head-to-head trial met inclusion criteria with
one being excluded from each category (see Appendix 16). In addition, there was one
trial comparing antipsychotic treatment with combined antipsychotic and antidepressant treatment.
6.3.3
Placebo-controlled trials
230
(1) 40/63
(2) 451/74
(3) 314/71
(4) 28/100
(1)(2) 33
(3) 32
(4) 27
100% borderline
personality disorder
N/% female
Mean age
Axis I/II
disorders
Additional
intervention
(1) 25
(2) 27
(1) 90/76
(2) 108/76
(1) SOLOFF1989
(2) SOLOFF1993
(1) BOGENSCHUTZ2004
(2) ELILILLY#6253
(3) SCHULZ2008
(4) ZANARINI2001
Study IDs
2 RCTs (198)
4 RCTs (833)
Haloperidol
No. trials
(Total
participants)
Olanzapine
29
60/82
PASCUAL2008
1 RCT (60)
Ziprasidone
Continued
Continued
previously
22
52/83
NICKEL2006
1 RCT (52)
Aripiprazole
231
232
Notes
None
Length of
follow-up
Efficacy
Length of
treatment
None
5 weeks
1.9% (n 3) of the
placebo group used
psychotherapy
Setting
Haloperidol
Olanzapine
18 months
8 weeks
Symptomatic
volunteers
Aripiprazole
None
12 weeks
Outpatients
prescribed
benzodiazepines,
antidepressants and
mood stabilisers
Ziprasidone
6.3.4
Studies reviewed
BOGENSCHUTZ2004
This 12-week study of 40 patients (66% women) compared olanzapine with placebo.
The authors used a scale that they had developed as the main outcome (CGI-BPD)
based on the nine DSM-IV criteria and the CGI. Data were not extractable because
means were given in graphs. Also, the scale does not appear to have been validated.
However, the authors concluded that olanzapine was more effective than placebo,
although weight gain was significantly greater.
ELILILLY#6253
This 12-week three-armed study of 451 patients (71% women) compared olanzapine
(at 2.5 mg and 5 mg to 10 mg) with placebo. The study continued with an open-label
phase from which data were not extracted. At the time it was considered by the GDG,
the study was unpublished and data were supplied specifically for the development of
the guideline. Other than on weight change where those on the higher dose gained
more weight than those on the lower dose, there was little or no difference between
the outcomes of the two doses (see forest plots 23.1 and 23.2 in Appendix 17).
Therefore, data were combined for dichotomous variables; for continuous variables,
data from the higher dose group were used since the lower dose is not usually considered a therapeutic dose.
SCHULZ2008
This 12-week study of 314 patients (71% women) compared olanzapine with placebo.
The study continued with an open-label phase from which data were not extracted. At
the time it was considered by the GDG, the study was unpublished and data were
supplied specifically for the development of the guideline. The study reported an
average weight gain of 2.86 kg in those taking olanzapine and a mean weight loss of
0.37 kg for those on placebo. The difference was reported as statistically significant
(p 0.001).
ZANARINI2001
This is a 24-week placebo-controlled trial of olanzapine in 28 women with borderline
personality disorder. The study suffered a very high attrition rate (58% versus 89%).
However, the authors reported that most of the participants who left treatment early
233
234
Aggression
Forest plot
Number of
studies/
participants
Forest plot
Quality of
evidence
(K 2; n 116)
Pharm 07.04
Pharm 01.11
(K 3;
n 615)
Very low
Moderate
SMD 0.41
(0.77, 0.04)
(K 3;
n 168)
(K 2;
n 585)
Number of
studies/
participants
Low
Moderate
Self-rated
effect size
Mental distress
Self-harm
Suicidality
Pharm 12.01
(K 2;
n 608)
High
Pharm 12.02
(K 2;
n 586)
Moderate
Pharm 14.01
(K 2;
n 596)
Moderate
Pharm 15.03
(K 6;
n 945)
Very low
RD (random
effects) 0.01
(0.08, 0.09)
39% versus 38%
Borderline
Leaving
personality
treatment
disorder
early
symptomatology
SMD (random
SMD (random
RD 0.01
SMD 0.26 SMD 0.15
effects) 0.68 effects) 0.12 (0.02, 0.04) (0.43, 0.1)* (0.31, 0.01)*
(1.21, 0.15)
(0.42, 0.18)
5% versus 3%
Depression
Quality of
evidence
Symptom
Pharm 16.03
(K 7;
n 1011)
Very low
RD (random
effects) 0
(0.04, 0.04)
7% versus 9%
Leaving
treatment
early because
of side effects
Pharm 17.03
(K 5;
n 666)
Very low
RD (random
effects) 0.02
(0.03, 0.07)
49% versus 36%
N reporting
side effects
6.3.5
Studies reviewed
SOLOFF1989
This is a three-arm 5-week placebo-controlled trial comparing amitriptyline (mean
149.1 mg) and haloperidol (mean 4.8 mg) in 90 patients (80%) with borderline and/or
schizotypal personality disorder. Participants began the study as inpatients. Several
publications were produced from the study, which makes some of the data unclear
(for example, the number leaving the study early). The final report does not give
details about those leaving early apart from those dropping out in the first 2 weeks,
while an interim report on the first 64 patients details drop-outs.
The study reports many outcomes that appear to be measuring similar aspects of
functioning. Therefore for depression, the HRSD-24 and BDI were extracted, but not
the relevant SCL-90 subscales. For anxiety/hostility, the SCL-90 hostility subscale
was extracted but not the relevant Inpatient Multidimensional Psychiatric Scale
(IMPS) subscales or the Buss-Durkee Hostility Inventory (BDHI). For
cognitive/schizotypal functioning, the IMPS total score was extracted, but not the
relevant subscales on either the IMPS or SCL-90. For impulsive/behavioural functioning, the BIS was extracted but not the Ward Scale of Impulsive Action Patterns
(WSIAP) (this was developed for the study) or a self-report test of impulse control.
Haloperidol was more effective than placebo for global functioning, depression,
hostility, schizotypal symptoms and impulsive behaviour. Amitriptyline was more
effective for depression. The authors found no significant interactions based on
borderline subtype (borderline personality disorder or schizotypal-borderline) on any
outcome measure.
SOLOFF1993
This is a three-arm 5-week placebo-controlled trial (with a 16-week continuation
period) comparing haloperidol (mean dose 3.93 mg) and phenelzine in 108 patients
with borderline personality disorder (61% with mixed borderline and schizotypal
personality disorder). Participants began the study as inpatients. The numbers leaving
treatment early are unclear and the study is too old to contact the study authors. The
235
236
Aggression
Anger
Number of
studies/
participants
Forest plot
Quality of
evidence
Forest plot
(K 1;
n 314)
(K 2;
n 585)
Number of
studies/
participants
Self-rated
effect size
Moderate
Moderate
Quality of
evidence
Symptom
(K 1;
n 34)
Pharm 11.01
(K 2;
n 557)
Very low
Pharm 07.05
Suicidality
Borderline
personality disorder
symptomatology
Pharm 12.01
(K 2;
n 608)
High
Pharm 12.02
(K 2;
n 586)
Moderate
Pharm 14.01
(K 2;
n 596)
Moderate
Very low
SMD 0.45
(0.23, 1.13)
Depression
Table 66: Summary evidence profile for olanzapine versus placebo (efficacy and self-harm/suicidality data)
Weight
Clinicianrated
effect size
RD (random
effects) 0.01
(0.16, 0.14)
39% versus 40%
RD (random
effects) 0.01
(0.09, 0.1)
8% versus 11%
RD (random
WMD 2.96
effects) 0.1
(2.37, 3.55)
(0.05, 0.25)
64% versus 54%
Quality of
evidence
Very low
Very low
Very low
Moderate
Number of (K 4;
studies/
n 833)
participants
(K 4;
n 833)
(K 2;
n 488)
(K 4;
n 668)
Forest plot
Pharm 16.03
Pharm 17.03
Pharm 18.02
Pharm 15.03
study authors reported superior efficacy for phenelzine over haloperidol and placebo.
They were unable to replicate their earlier results for haloperidol.
Haloperidol showed an effect on only self-rated depression and hostility symptoms (see Table 68).
Comment
There is some evidence of the effectiveness of haloperidol in reducing symptoms of
depression, hostility and impulsivity in people with borderline personality disorder
when given in lower doses than for psychotic disorders. However, this is based on a
small number of participants. Haloperidol is known to be associated with extrapyramidal symptoms and can prolong the cardiac QTc interval. Prescribers should monitor for extrapyramidal symptoms and follow the advice in the Summary of Product
Characteristics regarding cardiac monitoring.
6.3.6
Studies reviewed
NICKEL2006
This is an 8-week placebo-controlled trial of aripiprazole in 52 patients aged 16 and
over (83% women) with an 18-month naturalistic follow-up. During the follow-up
period those initially taking aripiprazole continued treatment, and those in the
placebo group started treatment, either with aripiprazole or another medication. The
follow-up data are therefore difficult to interpret. In addition, the study authors
declared in the published paper that no funding had been received for the study. See
237
238
Depression
Pharm 06.03
Forest plot
Pharm 07.03
Forest plot
(K 2;
n 114)
Number of
studies/
participants
Very low
Quality of
evidence
SMD 0.09
(0.46, 0.28)*
(K 1;
n 58)
(K 2;
n 114)
Number of
studies/
participants
Pharm 08.01
Very low
Low
Self-rated
effect size
Hostility
Pharm 09.02
(K 2;
n 114)
Low
SMD 0.46
(0.84, 0.09)*
Pharm 09.01
(K 1;
n 58)
Very low
Global
functioning
Quality of
evidence
Symptom
Pharm 10.02
(K 1;
n 58)
Moderate
SMD 0.18
(0.34, 0.7)
Pharm 10.01
(K 2;
n 114)
Very low
SMD 0.07
(0.3, 0.43)
Impulsivity
Pharm 11.01
(K 1;
n 58)
Very low
SMD 0.23
(0.28, 0.75)*
Mental
distress
Pharm 17.03
(K 2;
n 126)
Very low
RD 0 (0.04, 0.04)
0% versus 0%
N reporting
side effects
6.3.7
Studies reviewed
PASCUAL2008
This 12-week study of 60 patients (82% women) compared ziprasidone with placebo.
Analysis of variance indicated no statistically significant differences between ziprasidone and placebo on the CGI-BPD. Nor were significant differences observed
between groups in depressive, anxiety, psychotic or impulsive symptoms. The mean
daily dose of ziprasidone was 84.1 mg/day (SD 54.8; range, 40200). The drug was
seen to be safe and no serious adverse effects were observed. See Table 70 for the
summary evidence profile.
Comment
The trial did not show a difference between ziprasidone and placebo on any of the
reported outcome measures. There is insufficient evidence on which to base a recommendation for the use of ziprasidone in the management of borderline personality
disorder.
6.3.8
Head-to-head trials
For study characteristics of trials of antipsychotics versus another active drug see
Table 71.
239
240
Number of
studies/
Participants
Forest plot
Quality of
evidence
Self-rated
effect size
Pharm 05.01
Pharm 04.01
Forest plot
Moderate
(K 1;
n 52)
Moderate
Number of (K 1;
studies/
n 52)
Participants
Quality of
evidence
Hostility
Pharm 09.02
(K 1;
n 52)
(K 1;
n 52)
Pharm 07.03
Moderate
Moderate
Pharm 06.03
(K 1;
n 52)
Moderate
Depression
Clinicianrated
effect size
Anxiety
Anger
Symptom
Pharm 11.01
(K 1;
n 52)
Moderate
SMD 1.27
(1.87, 0.67)
Mental
distress
Leaving
N reporting
treatment
side effects
early because
of side effects
Pharm 15.04
(K 1;
n 52)
Very low
Pharm 16.03
(K 1;
n 52)
Very low
Pharm 17.03
(K 1;
n 52)
Very low
RD 0
RD 0
RD 0
(0.07, 0.07) (0.07, 0.07) (0.07, 0.07)
0% versus 0% 0% versus 0% 0% versus 0%
Leaving
treatment
early
Anxiety
Clinicianrated effect
size
Quality of
evidence
Very low
Depression
Impulsiveness Leaving
treatment
early
Very low
Very low
Very low
Number of (K 1;
studies/
n 60)
participants
(K 1;
n 60)
(K 1;
n 60)
(K 1;
n 60)
Forest plot
Pharm 06.04
Pharm 10.01
Pharm 15.03
Pharm 05.01
WMD 4.4
(11.16, 2.36)
Quality of
evidence
Very low
Number of
studies/
participants
(K 1;
n 60)
Forest plot
Pharm 07.03
Self-rated
effect size
241
Olanzapine
versus
fluoxetine
Amitriptyline
versus
haloperidol
No. trials
(Total
participants)
1 RCT (80)
1 RCT (452)
1 RCT (90)
Study IDs
LEONE1982
ZANARINI2004
SOLOFF1989
N/% female
80/55
45/100
90/76
Mean age
31
23
25
Axis I/II
None
None
39% borderline
personality
disorder/4%
schizotypal personality
disorder/57% mixed
disorders
Additional
intervention
Fluorazepam and
chloral hydrate
as sedatives
None
Setting
Outpatients
Outpatients
Inpatients
Length of
treatment
6 weeks
8 weeks
5 weeks
Length of
follow-up
None
None
None
Notes
Efficacy outcomes
not extractable
242
Efficacy
data
Leaving
treatment
early
Leaving
treatment
early because
of side effects
Risk
difference
Not
RD 0.03
RD 0.05
extractable (0.18, 0.13)
(0.14, 0.04)
13% versus 15% 3% versus 8%
N reporting
side effects
RD 0.08
(0.28, 0.13)
28% versus 35%
Overall
evidence
quality
Very low
Very low
Very low
Number of
studies/
number of
participants
(K 1;
n 80)
(K 1;
n 80)
(K 1;
n 80)
Forest plot
Pharm 15.05
Pharm 16.04
Pharm 17.02
Comment
There is very little evidence comparing one antipsychotic with another, and no
evidence for superior efficacy of any one antipsychotic in the management of borderline personality disorder.
Studies reviewed of haloperidol versus phenelzine
SOLOFF1993
This is a 5-week three-arm placebo-controlled trial (with a 16-week continuation
period) comparing haloperidol and phenelzine in 108 patients with borderline personality disorder (61% with mixed borderline and schizotypal personality disorder).
Participants began the study as inpatients. The numbers leaving treatment early are
unclear and the study is too old to contact the study authors. The study authors reported
superior efficacy for phenelzine over haloperidol and placebo. They were unable to
replicate their earlier results for haloperidol.
243
6.3.9
1 RCT (452)
Study IDs
ZANARINI2004
N/% female
45/100
Mean age
23
None
Additional intervention
None
Setting
Outpatients
Length of treatment
8 weeks
Length of follow-up
None
Studies reviewed
ZANARINI2004
This is an 8-week three-arm trial of olanzapine, fluoxetine and combination olanzapine and fluoxetine in 45 women with borderline personality disorder. Evidence
for efficacy, and most acceptability and tolerability outcomes, was very low quality. There was evidence that those taking combined treatment were on average
1.5 kg lighter than those taking olanzapine alone. The summary evidence profile is
in Table 74.
244
Aggression
Pharm 16.04
Pharm 03.01
Forest plot
Pharm 06.08
(K 1; n 29) (K 1; n 31)
(K 1; n 29)
Number of
studies/
participants
Very low
Very low
RD 0.13
(0.06, 0.33)
13% versus 0%
Leaving
treatment
early
Very low
SMD 0.39
(0.35, 1.13)*
Depression
Quality of
evidence
Outcome
Pharm 17.02
(K 1; n 31)
Very low
RD 0.07
(0.1, 0.23)
7% versus 0%
Leaving
treatment
early because
of side effects
Weight
Pharm 17.05
(K 1; n 31)
Very low
Pharm 18.02
(K 1; n 29)
Moderate
RD 0.2
WMD 1.5
(0.42, 0.02)
(2.91, 0.09)
80% versus 100%
N reporting
side effects
Table 74: Summary evidence profile for olanzapine versus olanzapine fluoxetine (harm data are for
olanzapine fluoxetine versus olanzapine)
245
6.4
ANTIDEPRESSANTS
6.4.1
Introduction
Antidepressants are primarily used to treat depression although some are also
licensed for anxiety spectrum disorders such as panic disorder, OCD and PTSD. A
small number are licensed for the treatment of neuropathic pain and nocturnal enuresis in children. Depression and symptoms of depression are common in people with
borderline personality disorder.
The mode of action of most antidepressants is via inhibition of monoamine reuptake transporters, which results in increased neurotransmission in serotonin and/or
noradrenergic pathways. Monoamine-oxidase inhibitors (MAOIs) such as phenelzine
inhibit the metabolism of several monoamines including serotonin.
There is some evidence that low serotonin levels may be associated with aggressive behaviour and impulsivity as well as low mood (Young & Leyton, 2002). Thus it
has been suggested that serotonergic antidepressants, such as SSRIs and amitriptyline, may ameliorate aggression and impulsivity.
Treatment with antidepressants, most of which have some effect on serotonin
pathways, has been linked with an increase in suicidal thoughts and acts (Friedman
& Leon, 2007), with young people being most at risk. Although the overall risk is
very low, it is not known if people with pre-existing impulse control problems, such
as those with borderline personality disorder, are particularly vulnerable.
6.4.2
Placebo-controlled trials
Three placebo-controlled trials met inclusion criteria with one being excluded (see
Table 75).
There were sufficient data to combine the placebo-controlled trials on only one
outcome measure, self-rated depression scores. This showed that antidepressants
were more effective than placebo in reducing depression symptoms (see Table 76).
Studies reviewed of amitriptyline (tricyclic antidepressant)
SOLOFF1989
This is a 5-week three-arm placebo-controlled trial comparing amitriptyline and
haloperidol in 90 patients (80%) with borderline and/or schizotypal personality disorder. Participants began the study as inpatients and were discharged after 2 weeks.
Several publications were produced from the study, which makes some of the data
246
Fluvoxamine
Phenelzine
No. trials
1 RCT (90)
(Total participants)
1 RCT (38)
1 RCT (72)
Study IDs
SOLOFF1989
RINNE2002
SOLOFF1993
N/% female
90/76
38/100
72*/76
Mean age
25
29
27
39% borderline
personality
disorder/4%
schizotypal personality
disorder/57% mixed
29% comorbid
depression,
21% comorbid
dysthymia,
8% comorbid
general anxiety
disorder,
32% PTSD
61% comorbid
schizotypal
personality
disorder
Additional
intervention
None
Setting
Inpatient
Mixed sample
Inpatients
discharged
after 2 weeks
Length of
treatment
5 weeks
6 weeks
5 weeks
Length of
follow-up
phase
None
None
16-week
continuation
Notes
*Ns for
phenelzine and
placebo groups
only (three-arm
trial)
247
Depression
Leaving treatment
early because of
side effects
N reporting side
effects
RD 0.01
(0.03, 0.06)
1% versus 0%
RD 0.08
(0.01, 0.15)
21% versus 13%
Quality of evidence
Very low
Very low
Number of studies/
participants
(K 3; n 167)
(K 3; n 167)
Forest plot
Pharm 16.01
Pharm 17.01
Clinician-rated
effect size
SMD 0.46
(0.82, 0.09)*
Number of studies/
participants
(K 2; n 119)
Forest plot
Pharm 07.01
unclear (for example, the number leaving the study early). The final report does not
give details on those leaving early apart from those dropping out in the first 2 weeks,
while an interim report on the first 64 patients details drop-outs.
The study reports many outcomes that appear to be measuring similar aspects of
functioning. Therefore for depression, the HRSD-24 and BDI were extracted, but not
the relevant SCL-90 subscales. For anxiety/hostility, the SCL-90 hostility subscale
was extracted, but not the relevant IMPS subscales or BDHI. For cognitive/schizotypal functioning, the IMPS total score was extracted, but not the relevant subscales
on either the IMPS or SCL-90. For impulsive/behavioural functioning, the BIS was
extracted but not the WSIAP (this was developed for the study) or a self-report test of
impulse control.
Amitriptyline was more effective than placebo in reducing depression symptoms.
The authors reported that they found no significant interactions based on borderline
subtype (borderline personality disorder or schizotypal-borderline) on any outcome
measure. See Table 77 for a summary evidence profile.
Comment
Amitriptyline is effective in the treatment of depressive symptoms in people with a
diagnosis of borderline personality disorder, although it is not clear if this effect is
248
Quality of evidence
Number of studies/
participants
Forest plot
(K 1; n 58)
Pharm 09.02
Very low
SMD 0.3
(0.82, 0.22)
Pharm 06.01
Forest plot
(K 1; n 57)
Pharm 10.01
(K 1; n 57)
Number of studies/
participants
Very low
SMD 0.12
(0.64, 0.4)
Impulsivity
Moderate
SMD 0.53
(1.06, 0)*
Hostility
Quality of evidence
Depression
Symptom
Pharm 16.01
(K 1; n 57)
Very low
RD 0
(0.07, 0.07)
0% versus 0%
Leaving treatment
early because of
side effects
Pharm 17.01
(K 1; n 57)
Very low
RD 0
(0.07, 0.07)
0% versus 0%
N reporting
side effects
249
Clinician-rated None
effect size
extractable
250
Leaving
treatment early
because of side
effects
N reporting
side effects
RD 0.06
(0.23, 0.11)
5% versus 11%
RD 0.05
(0.08, 0.18)
5% versus 0%
RD 0.34
(0.08, 0.61)
90% versus 56%
Quality of
evidence
Very low
Very low
Very low
Number of
studies/
participants
(K 1; n 38)
(K 1; n 38)
(K 1; n 38)
Forest plot
Pharm 15.01
Pharm 16.01
Pharm 17.01
6.4.3
251
252
Depression
Pharm 07.01
Forest plot
(K 1; n 62)
(K 1; n 62)
Number of
studies/
participants
Pharm 08.01
Very low
Very low
SMD 0.14
(0.36, 0.64)
Global
functioning
Quality of
evidence
Symptom
Impulsivity
Pharm 09.01
(K 1; n 62)
Moderate
Pharm 10.01
(K 1; n 62)
Very low
SMD 0.64
SMD 0
(1.15, 0.13)* (0.5, 0.5)
Hostility
Pharm 16.01
(K 1; n 72)
Very low
RD 0
(0.05, 0.05)
0% versus 0%
Leaving
treatment
early because
of side effects
Pharm 17.01
(K 1; n 72)
Moderate
RD 0
(0.05, 0.05)
0% versus 0%
N reporting
side effects
Aggression
Pharm 03.01
Forest plot
(K 1; n 29)
(K 1; n 29)
Number of
studies/
participants
Pharm 06.08
Moderate
Very low
SMD 0.73
(0.03, 1.49)*
Depression
Quality of
evidence
Symptom
Pharm 15.02
(K 1; n 30)
Very low
RD 0.07
(0.1, 0.24)
7% versus 0%
Leaving
treatment early
Pharm 16.02
(K 1; n 30)
Very low
RD 0.07
(0.1, 0.24)
7% versus 0%
Leaving
treatment early
because of side
effects
Weight
Pharm 17.02
(K 1; n 30)
Very low
Pharm 18.01
(K 1; n 29)
Moderate
RD 0.43
WMD 2.5
(0.69, 0.17)
(4.29, 0.72)
57% versus 100%
N reporting
side effects
253
1 RCT (45)
Study IDs
ZANARINI2004
N/% female
45/100
23
Comparisons
Setting
Symptomatic volunteers
Length of treatment
8 weeks
Length of follow-up
None
6.4.4
Comment on antidepressants
6.5
6.5.1
Introduction
The omega-3 fatty acids, eicosapentaenoic acid (EPA) and docosahexaenoic acid
(DHA) have important biological functions in the CNS; their presence is essential to
254
Aggression
Pharm 03.01
Forest plot
(K 1; n 26)
(K 1; n 29)
Number of
studies/
participants
Pharm 06.08
Very low
Very low
SMD 0.41
(1.19, 0.37)
Depression
Quality of
evidence
Symptom
Leaving
treatment early
because of side
effects
Pharm 15.02
(K 1; n 39)
Very low
Pharm 16.02
(K 1; n 29)
Very low
RD 0.06
RD 0.07
(0.3, 0.18)
(0.1, 0.24)
15% versus 21% 7% versus 0%
Leaving
treatment early
Pharm 17.02
(K 1; n 29)
Very low
RD 0.23
(0.56, 0.1)
57% versus 80%
N reporting
side effects
Pharm 18.01
(K 1; n 26)
Moderate
WMD 1
(0.39, 2.39)
Weight
Table 82: Summary evidence profile for olanzapine fluoxetine versus fluoxetine (harm data is fluoxetine versus
olanzapine fluoxetine)
255
Studies reviewed
HALLAHAN2007
This is a 12-week placebo-controlled trial of omega-3 fatty acids in 49 people with
recurrent self-harm. Enrolment onto the trial followed presentation at an emergency
department for a self-harm episode. Just over 81% had a diagnosis of borderline
personality disorder at baseline. The mean BDI depression scores at baseline were in
the severe range for both groups. However, there was a statistically and clinically
significant difference between the treatment and placebo groups at baseline and therefore baseline scores were used as a covariate. In addition, 53% of participants were
on psychotropic medication at baseline; all were taking antidepressants with many
also taking benzodiazepines. The authors note that the study was not powered to
detect differences in self-harm rates.
ZANARINI2003
This is an 8-week placebo-controlled trial of omega-3 fatty acids in 30 women with
a diagnosis of borderline personality disorder. It was designed as a pilot study,
although a larger trial is yet to be published. The study recruited via newspaper advertisements in Boston in the US. Patients were excluded if they had a serious mental
illness but the number with other axis I disorders is not reported. See Table 83 for
study characteristics.
Treatment had some effect on aggression and depression symptoms, although the
larger HALLAHAN2007 study carried more weight in the meta-analyses and found
a larger effect on symptoms than the smaller ZANARINI2003 study. Over half of the
patients in this study were taking antidepressants. There was also some evidence of
increased self-harm/suicidality among those in the treatment group. See Table 84 for
the summary evidence profile.
Comment
There are two small trials of omega-3 fatty acids (fish oils) in the treatment of people
with borderline personality disorder. There is some evidence of efficacy in some
256
2 RCT (79)
Study IDs
HALLAHAN2007
ZANARINI2003
N/% female
(1) 49/65
(2) 30/100
(1) 30
(2) 26
Additional intervention
Setting
Length of treatment
8 weeks
Length of follow-up
None
symptoms. In addition, one of the studies has considerable confounding factors and is
therefore hard to interpret. There is therefore insufficient evidence on which to base a
recommendation for the use of omega-3 fatty acids in the treatment of borderline
personality disorder.
6.6
NALOXONE
6.6.1
Introduction
Naloxone is an opioid antagonist that is licensed for the management of opioid overdose. It has a short half-life and can only be administered by subcutaneous, intramuscular or intravenous injection.
As well as blocking the effects of opioid drugs, naloxone also blocks the effects
of naturally occurring endorphins and enkephalins. It is thought that these
257
258
Aggression
Depression
Number of
studies/
participants
Forest plot
Quality of
evidence
Self-rated
effect size
(K 1; n 39)
Pharm 07.08
Moderate
SMD 0.96
(1.63, 0.3)
Pharm 03.01
Forest plot
(K 2; n 69)
Very low
Pharm 12.01
(K 2; n 66)
(K 2; n 66)
Number of
studies/
participants
Leaving
treatment early
Pharm 15.07
(K 2; n 79)
Very low
RD 0.01
RD 0.08
(0.19, 0.21)
(0.24, 0.08)
23% versus 27% 12% versus 22%
Self-harm
(dichotomous
data)
Pharm 06.07
Moderate
Moderate
Quality of
evidence
Symptom
Pharm 16.06
(K 2; n 79)
Very low
RD 0.05
(0.15, 0.05)
0% versus 5%
Leaving
treatment early
because of side
effects
Table 84: Summary evidence profile for omega-3 fatty acids versus placebo
Pharm 17.06
Significant
heterogeneity:
use individual
study results
N reporting
side effects
6.6.2
Studies reviewed
PHILIPSEN2004A
This is placebo-controlled cross-over trial of naloxone in nine women with a diagnosis of borderline personality disorder with moderate to severe dissociative symptoms;
most (n 8) experienced concomitant flashbacks. Patients were given naloxone
when they were in an acute dissociative state. Pre-crossover data are not given and
therefore the trial data have not been input. The study authors report that although
dissociative symptoms decreased after administration of naloxone or placebo, there
was no advantage for the study drug. See Table 85 for the study characteristics.
Comment
There were no extractable data from the trial. The GDG took the view that naloxone
is not an acceptable treatment for people with borderline personality disorder since it
has to be injected and excluded the trial.
Table 85: Study characteristics for placebo-controlled trials of naloxone
Naloxone
No. trials (Total participants)
1 RCT (9)
Study IDs
PHILIPSEN2004A
N/% female
9/100
Mean age
35
Additional intervention
None
Setting
Length of treatment
Length of follow-up
None
Notes
6.7.1
Introduction
There are relatively few RCTs examining the efficacy of drug treatments in people
with borderline personality disorder, and the data for the efficacy of individual drugs
is correspondingly weak. However, several studies reported efficacy for individual
symptoms, and so the data are examined by symptom. The symptoms reported are
based on the outcomes used by the individual studies.
6.7.2
Where there were sufficient data (at least three placebo-controlled trials reporting
similar outcomes) trials of different active treatments were combined to show the
effect on symptoms of pharmacological treatment.
There were insufficient data for the following symptoms: aggression, anxiety,
global function, quality of life, self-harm/suicidality, service use and severe
psychopathology. However, there was an effect of treatment on symptoms of anger
(clinician-rated) and depression (self-rated), but not on hostility. See Table 86 for the
summary evidence profile.
6.7.3
Aggression
Number of studies/
participants
Forest plot
Quality of evidence
Pharm 01.03
Forest plot
Self-rated
(K 3; n 121)
Number of studies/
participants
(K 9; n 385)
Pharm 01.07
Pharm 01.09
(K 5; n 480)
High
SMD 0.37
(0.56, 0.19)
Hostility
Low
SMD (random
effects) 0.72
(1.06, 0.38)*
Pharm 01.06
(K 5; n 223)
Moderate
SMD 0.35
(0.61, 0.08)
SMD 1.97
(2.41, 1.52)
Clinician-rated
Depression
Anger
Symptom
Pharm 01.10
(K 3; n 174)
High
SMD 0.02
(0.28, 0.32)
Impulsiveness
Pharm 01.11
(K 3; n 615)
Very low
SMD (random
effects) 0.12
(0.42, 0.18)*
Mental distress
Table 86: Summary evidence profile for the effect on symptoms of any pharmacological treatment versus placebo
(where 3 studies available)
261
Comparison
Population
Outpatients
SCHULZ2008
Outpatients
Mixed sample
Outpatients
ZANARINI2003
Symptomatic volunteers
ZANARINI2004
6.7.4
Anger
The self-report STAXI was reported by several studies, either the individual subscales
or the combined subscale total. Data from the state anger subscale were entered. One
study also provided follow-up data based on naturalistic follow-up. No conclusions
can be drawn from this since the placebo group took medication during the follow-up
period (the data are not presented here). The trials were between 8 and 12 weeks long.
Four studies reported measures of anger (see Table 89).
Sufficient studies reporting similar outcomes were available to undertake an
analysis of all active treatments versus placebo. This showed that there was highquality evidence that treatment with drugs reduces anger symptoms, with effective
treatments including topiramate (quality of evidence: moderate) and aripiprazole
(quality of evidence: moderate). Both studies were in symptomatic volunteers. No
data were skewed. The summary evidence profile is in Table 90.
Comment
There is evidence that topiramate and aripiprazole reduce symptoms of anger within
8 to 12 weeks in symptomatic volunteers who meet diagnosis for borderline personality disorder and a comorbid axis I disorder, in particular depression or anxiety.
However, these results are based on the studies by Nickel and colleagues (see Section
6.1.6). There was unlikely to be a difference in anger symptoms between outpatients
taking olanzapine and those taking placebo. The GDG concluded that there was no
evidence for the effectiveness of drug treatments in controlling symptoms of anger in
people with borderline personality disorder.
262
Outpatients
Divalproex versus
placebo
Olanzapine versus
fluoxetine
Olanzapine versus
fluoxetine
olanzapine
Fluoxetine versus
fluoxetine
olanzapine
Olanzapine versus
placebo
Omega-3 fatty
acids
Population
Comparison
Endpoint (self-rated)
Endpoint (clinician-rated)
Effect size
Quality of evidence
Number of studies, number of participants
Forest plot
Table 88: Summary evidence profile for effectiveness of treatment for aggression symptoms
263
Comparison
Population
NICKEL2004
Symptomatic volunteers
NICKEL2005
Symptomatic volunteers
NICKEL2006
Symptomatic volunteers
SCHULZ2008
Outpatients
TRITT2005
Symptomatic volunteers
6.7.5
Anxiety
The clinician-completed HARS and STAI, and the self-completed SCL-90 (anxiety
subscale) were reported. One study also provided follow-up data based on naturalistic follow-up. No conclusions can be drawn from this since the placebo group took
medication during the follow-up period (the data are not presented here). The trials
were between 8 and 24 weeks long.
Three studies reported measures of anxiety (see Table 91).
There were insufficient studies reporting similar outcomes to undertake an analysis of all active treatments versus placebo. None of the data were skewed. There is
evidence for the effectiveness of topiramate and aripiprazole (moderate) in
symptomatic volunteers. See Table 92 for the summary evidence profile.
Comment
There is evidence that topiramate and aripiprazole reduce symptoms of anxiety within
8 to 12 weeks in symptomatic volunteers who meet threshold for a diagnosis of
borderline personality disorder and a comorbid axis I disorder, most commonly
depression or anxiety. However, these results are based on the studies by Nickel and
colleagues (see Section 6.1.6). There was no evidence of an effect of other drugs
(olanzapine and ziprasidone). The GDG concluded that there was no evidence for the
effectiveness of drug treatments in controlling symptoms of anxiety in people with
borderline personality disorder.
6.7.6
Depression
The clinician-completed HDRS and MADRS, and the self-completed BDI and SCL90 (depression subscale), were reported. One study also provided follow-up data
based on naturalistic follow-up. No conclusions can be drawn from this since the
placebo group took medication during the follow-up period and the data are not
presented here. Another trial provided data for 16-week follow-up. The trials were
between 8 and 24 weeks long. In most studies participants had measurable depression
264
265
Symptomatic volunteers
Outpatients
Population
Comparison
Endpoint (clinician-rated)
Follow-up (clinician-rated)
Effect size
Quality of evidence
Number of studies, number of participants
Forest plot
Table 90: Summary evidence profile for effectiveness of treatment for anger symptoms (all outcomes)
Comparison
Population
BOGENSCHUTZ
2004
Outpatients
LOEW2006
Symptomatic volunteers
NICKEL2006
Symptomatic volunteers
PASCUAL2008
Outpatients
symptoms, even in trials where major depressive disorder had been specifically
excluded, while some trials specifically included only those with comorbid major
depressive disorder. Eleven studies reported measures of depression (see Table 93).
There were sufficient studies reporting similar outcomes to undertake an analysis
of all active treatments versus placebo. This showed that treatment with drugs is effective for depression symptoms, although it should be noted that although most participants had some depression symptoms not all had been diagnosed with comorbid
affective disorder. However, because of skewed data the overall quality grade was low.
Individual drugs that showed an effect include: divalproex (in a mixed sample of
participants including symptomatic volunteers with comorbid bipolar II disorder and
graded low because of skewed data); topiramate (in symptomatic volunteers with
comorbid affective and anxiety disorders); aripiprazole (in symptomatic volunteers
with comorbid affective and anxiety disorders); haloperidol (in inpatients with unstable borderline personality disorder and schizotypal personality disorder [50% also
with axis I diagnoses] and moderate depression at baseline, also graded low because
of skewed data); and amitriptyline (mix of unstable borderline personality disorder
and schizotypal personality disorder; moderate depression at baseline). Omega-3 fatty
acids (moderate depression; no formal diagnosis) were also effective although the
data were skewed. There were few follow-up data. However, one study added a 16week continuation phase that showed that placebo was more effective after a total of
21 weeks of treatment.
In the available head-to-head trials, fluoxetine is better than olanzapine (100%
axis I disorders [mood, substance use, anxiety, eating] graded low because of skewed
data). However, after a further 16 weeks of treatment, the placebo group showed
fewer depression symptoms. Phenelzine (mix of borderline personality disorder and
schizotypal personality disorder, with axis I disorders; moderate depression at baseline) was not effective compared with placebo. See Table 94 for the summary
evidence profile.
Comment
There is evidence that a range of drug treatments are effective in reducing depressive
symptoms in people with a diagnosis of borderline personality disorder who have
266
267
Population
Outpatients
Outpatients
Comparison
Topiramate
versus placebo
Aripiprazole
versus placebo
Olanzapine
versus placebo
Ziprasidone
versus placebo
SMD 0.11
(0.62, 0.39)
Very low
(K 1; n 60)
Pharm 05.01
SMD 0.21
(0.46, 0.89)
Very low
(K 1; n 34)
Pharm 05.03
SMD 1.41
(2.03, 0.8)
Moderate
(K 1; n 52)
Pharm 05.03
SMD 1.4
(1.99, 0.81)
Moderate
(K 1; n 56)
Pharm 05.03
Effect size
Quality of evidence
Number of studies, number of participants
Forest plot
Table 92: Summary evidence profile for effectiveness of treatment for anxiety symptoms
268
Haloperidol versus
amitriptyline versus placebo
FRANKENBURG2002
HOLLANDER2001
LEOW2006
NICKEL2006
PASCUAL2008
SOLOFF1989
SOLOFF1993
ZANARINI2003
ZANARINI2004
Outpatients
Symptomatic volunteers
with comorbid affective/
anxiety disorders
Mixed sample
Symptomatic volunteers;
comorbid bipolar II (excluded
major depression)
DELAFUENTE1994
Outpatients
Population
Comparison
BOGENSCHUTZ2004
Study ID
Not given
Not given
Depression at baseline
(instrument)
Any drug
compared with
placebo (where
3 studies
report similar
outcomes)
Carbamazepine
versus placebo
Antidepressants
versus placebo
Inpatients
Population
Antipsychotics
versus placebo
Comparison
Clinician rated
Severe depression
Moderate depression
Continued
Self-rated
Effect size
Quality of evidence
Number of studies, number of participants
Forest plot
Depression at
baseline
Table 94: Summary evidence profile for effectiveness of treatment for depression symptoms
Population
Comparison
Haloperidol
versus placebo
Haloperidol
versus placebo
(follow-up at 21
weeks)
Amitriptyline
versus placebo
Phenelzine
versus placebo
Phenelzine
versus placebo
(follow-up at
16 weeks)
Self-rated
SMD 0.49 (1.02, 0.04)*
Low
(K 1; n 56)
Pharm 07.04
Clinician rated
Effect size
Quality of evidence
Number of studies, number of participants
Forest plot
Depression at
baseline
Outpatients
Ziprazidone
versus placebo
Symptomatic volunteers/presentations
at A&E following self-harm
Omega-3
fatty acids
Divalproex
versus placebo
Topiramate
versus placebo
Aripiprazole
versus placebo
Symptomatic
volunteers
Outpatients
Olanzapine
versus placebo
Outpatients
Severe depression
Not given
Some depression
present
Moderate/severe
depression
Continued
Not given
Fluoxetine
versus fluoxetine
olanzapine
Olanzapine
versus fluoxetine
olanzapine
Mild depression
Olanzapine
versus fluoxetine
Depression at
baseline
Population
Comparison
Self-rated
Clinician rated
Effect size
Quality of evidence
Number of studies, number of participants
Forest plot
6.7.7
Hostility
Comparison
Population
DELAFUENTE1994
Carbamazepine versus
placebo
Symptomatic volunteers;
comorbid bipolar II
disorder (excluded major
depression)
LEOW2006
NICKEL2006
SOLOFF1989
Haloperidol versus
amitriptyline versus
placebo
SOLOFF1993
Haloperidol versus
phenelzine versus
placebo
273
6.7.8
Impulsivity
6.7.9
Two studies reported the ZAN-BPD scale which measures symptoms of borderline
personality disorder (see Table 99).
There were insufficient studies reporting similar outcomes to undertake an analysis of all active treatments versus placebo. There was some evidence that haloperidol
was effective in reducing impulsivity in inpatients. The summary evidence profile is
in Table 100.
Comment
There is no evidence that olanzapine produces a clinically significant reduction in the
symptoms of borderline personality disorder compared with placebo, as measured by
the ZAN-BPD.
274
Inpatients
Topiramate versus
placebo
Carbamazepine versus
placebo
Haloperidol versus
placebo
Haloperidol versus
placebo (follow-up at
21 weeks)
Antipsychotics
Population
Divalproex versus
placebo
Anticonvulsants
Comparison
Continued
Self-rated
Clinician-rated
Effect size
Quality of evidence
Number of studies, number of participants
Forest plot
275
276
No stated comorbidities:
outpatients
Olanzapine versus
placebo
Antipsychotics versus
placebo
Amitriptyline versus
placebo
Aripiprazole versus
placebo
Antidepressants
Population
Comparison
Clinician-rated
Self-rated
Effect size
Quality of evidence
Number of studies, number of participants
Forest plot
Phenelzine versus
placebo (follow-up at 21
weeks)
Phenelzine versus
placebo
SMD 0.28
(0.59, 0.03)
Very low
(K 4; n 166)
SMD 0.56
(1.19, 0.08)
Moderate
(K 1; n 40)
SMD 0.64
(1.15, 0.13)
Moderate
(K 1; n 62)
Pharm 09.01
(K 1; n 58)
Pharm 09.02
277
Comparison
Population
PASCUAL2008
Outpatients
SOLOFF1989
SOLOFF1993
6.8
6.8.1
Global functioning
One study reported global functioning measured by the GAF, both in clinical populations mostly with comorbid depression (see Table 101).
There were insufficient studies reporting similar outcomes to undertake an analysis of all active treatments versus placebo. Haloperidol showed an effect on global
functioning (moderate). The summary evidence profile is in Table 102.
Comment
There was some effect on global functioning for haloperidol after 21 weeks of treatment, although only in one small study. There was no evidence for the effectiveness
of phenelzine.
6.8.2
Mental distress
Four studies reported measures of mental distress as measured by the GSI, which is
calculated from the self-rated SCL-90 (see Table 103). It should be noted that the
SCL-90 is made up of nine subscales, several of which are not usually associated with
borderline personality disorder symptomatology. Therefore, this measure may have
limited validity in this population.
There were insufficient studies reporting similar outcomes to undertake an analysis of all active treatments versus placebo. There was some evidence that aripiprazole
278
Outpatients
Antidepressants
Population
Antipsychotics
Comparison
Clinician-rated
Self-rated
Effect size
Quality of evidence
Number of studies, number of participants
Forest plot
Table 98: Summary evidence table for studies reporting impulsivity outcomes
279
Comparison
Population
ELI LILLY#6253
Outpatients
SCHULZ2008
Outpatients
Population
Effect size
Quality of evidence
Number of studies, number of
participants
Forest plot
Olanzapine versus
placebo
Outpatients
Comparison
Population
SOLOFF1993
Haloperidol versus
phenelzine versus placebo
6.8.3
Four studies reported self-harm rates or suicide attempts (see Table 105).
280
Table 102: Summary evidence profile for effect of treatment on global functioning
Comparison
Population
Effect size
Quality of evidence
Number of studies, number
of participants
Forest plot (all
clinician-rated)
Haloperidol versus
placebo
SMD 0.31
(0.83, 0.21)
Very low
(K 1; n 58)
Pharm 08.01
Haloperidol versus
placebo (follow-up
at 21 weeks)
Phenelzine versus
placebo
Phenelzine versus
placebo (follow-up
at 21 weeks)
SMD 0.17
(0.79, 0.46) Very low
(K 1; n 40)
Pharm 08.01
Comparison
Population
ELI LILLY#6253
Outpatients
SCHULZ2008
Outpatients
NICKEL2006
Symptomatic volunteers
with comorbid affective/
anxiety disorders
SOLOFF1989
Haloperidol versus
amitriptyline versus placebo
282
Outpatients
Follow-up
Endpoint
Effect size
Quality of evidence
Number of studies, number of participants
Forest plot
Population
Comparison
Table 104: Summary evidence table for studies reporting mental distress outcomes (all self-rated)
Pharmacological and other physical treatments
Comparison
Population
Outpatients
SCHULZ2008
Outpatients
ZANARINI2003
Symptomatic volunteers
There was little difference in rates of self-harm between those taking omega-3
fatty acids and those taking placebo. This may be because treatment was unlikely to
have an effect within the relatively short time frame of this trial. Similarly, there was
little difference in the rate of suicide attempts or self-harm between those taking olanzapine and those taking placebo. See Table 106 for the summary evidence profile.
Comment
There is no evidence that drugs reduce the rates of self-harm and/or suicide attempts.
There was no evidence for the effect of other drugs on this outcome.
6.8.4
Psychopathology
Two studies reported the Brief Psychiatric Rating Scale (BPRS) which is a general
measure of psychopathology (see Table 107).
There was significant heterogeneity so the results of the two studies are reported
separately (see Table 108).
Comment
There was evidence that taking placebo improved general psychopathology compared
with carbamazepine, while the evidence for the effectiveness of ziprasidone on this
outcome was inconclusive.
6.9
6.9.1
Leaving treatment early for any reason (that is, study attrition rate) is reported by
most studies, although in a few the data were unclear and clarification was sought
from authors.
283
284
Population
Outpatients
A&E presentation
following
self-harm/
symptomatic
volunteers
Comparison
OAS-M suicidality
subscale change
scores
SMD 0.26
(0.43, 0.1)
Moderate
(K 2; n 586)
Pharm 12.02
Suicide attempts/self-harm
Effect size
Quality of evidence
Number of studies, number of participants
Forest plot
ZAN-BPD suicidal/
self-mutilating
behaviour
Comparison
Population
DE LAFUENTE1994
Inpatients
PASCUAL2008
Outpatients
Population
Effect size
Quality of evidence
Number of studies, number of participants
Forest plot
Carbamazepine
versus placebo
Inpatients
Ziprasidone
versus placebo
Outpatients
Population
Effect size
Quality of evidence
Number of studies, number
of participants
Forest plot
Fluvoxamine versus
placebo
Fluoxetine versus
fluoxetine olanzapine
Olanzapine versus
placebo
Outpatient/community
Aripiprazole versus
placebo
RD 0 (0.07, 0.07),
0% versus 0%
Very low
(K 1; n 52)
Pharm 15.04
Ziprasidone versus
placebo
Outpatients
Antipsychotics versus
placebo
Various settings
Olanzapine versus
fluoxetine
Antidepressants
Antipsychotics
286
Population
Effect size
Quality of evidence
Number of studies, number
of participants
Forest plot
symptomatic volunteers
(K 1; n 30)
Pharm 15.04
Olanzapine versus
fluoxetine olanzapine
Loxapine versus
chlorpromazine
Outpatients
Divalproex versus
placebo
Topiramate versus
placebo
Lamotrigine versus
placebo
Symptomatic volunteers
Carbamazepine versus
placebo
Inpatients
Anticonvulsants versus
placebo
Various settings
Anticonvulsants
Continued
287
Population
Effect size
Quality of evidence
Number of studies, number
of participants
Forest plot
Very low
(K 8; n 470)
Pharm 15.06
6.9.2
Leaving treatment early because of side effects is also reported by most studies.
However, few comparisons showed a statistically significant effect size, other than for
anticonvulsants versus placebo, where placebo was more tolerable. See Table 110 for
the summary evidence profile.
Comment
Only one of the calculated effect sizes was statistically significant (anticonvulsants
versus placebo) favouring placebo, although in placebo-controlled trials more participants taking the study drug left treatment early because of side effects compared with
those taking placebo.
6.9.3
Most studies also reported the number of participants reporting side effects (regardless of whether they left treatment early). In the divalproex versus placebo studies
there were high levels of side effects reported by those both in the treatment and
placebo groups, but in most other studies few side effects were reported. Participants
taking olanzapine plus fluoxetine reported fewer side effects than those taking
olanzapine alone. Fewer of those in the fluoxetine-only group reported side effects.
However, the rate of reporting in all four treatment groups in this trial was very high.
See Table 111 for the summary evidence profile.
Comment
In some trials a large proportion of participants reported side effects in both treatment
and placebo groups, while in other trials reporting levels were much lower. Given this
heterogeneity in these data, they are hard to interpret.
288
Population
Effect size
Quality of evidence
Number of studies, number
of participants
Forest plot
Amitriptyline versus
placebo
Mix of unstable
borderline personality
disorder and schizotypal
personality disorder;
moderate depression at
baseline; inpatients
RD 0 (0.07, 0.07) ,
0% versus 0%
Very low
(K 1; n 57)
Pharm 16.01
Phenelzine versus
placebo
Mix of borderline
personality disorder and
schizotypal personality
disorder with axis I disorders;
moderate depression at
baseline; inpatients
RD 0 (0.05, 0.05) ,
0% versus 0%
Very low
(K 1; n 72)
Pharm 16.01
Fluvoxamine versus
placebo
Antidepressants versus
placebo
Various settings
Fluoxetine versus
fluoxetine olanzapine
Olanzapine versus
placebo
Outpatient/community
Aripiprazole versus
placebo
RD 0 (0.07, 0.07),
0% versus 0%
Antidepressants
Antipsychotics
Continued
289
Population
Effect size
Quality of evidence
Number of studies, number
of participants
Forest plot
somatoform); symptomatic
volunteers
Very low
(K 1; n 52)
Pharm 16.03
Haloperidol versus
placebo
Antipsychotics versus
placebo
Various settings
Olanzapine versus
fluoxetine
Loxapine versus
chlorpromazine
Outpatients
Olanzapine versus
fluoxetine olanzapine
Divalproex versus
placebo
Mixed outpatients;
symptomatic volunteers
Topiramate versus
placebo
RD 0 (0.05, 0.05),
0% versus 0%
Anticonvulsants
290
Population
Effect size
Quality of evidence
Number of studies, number
of participants
Forest plot
somatoform, eating,
substance/alcohol misuse);
symptomatic volunteers
Very low
(K 3; n 131)
Pharm 16.05
Lamotrigine versus
placebo
Symptomatic volunteers
RD 0 (0.15, 0.15),
0% versus 0%
(K 1; n 27)
Very low
Pharm 16.05
Carbamazepine versus
placebo
Inpatients
RD 0 (0.17, 0.17),
0% versus 0%
Very low
(K 1; n 20)
Pharm 16.05
Anticonvulsants versus
placebo
Various settings
RD 0 (0.14, 0.14),
0% versus 0%
(K 1; n 30)
Very low
Pharm 16.06
6.9.4
Weight change
Population
Effect size
Quality of evidence
Number of studies, number of
participants
Forest plot
Amitriptyline
versus placebo
Mix of unstable
borderline personality
disorder and schizotypal;
personality disorder;
moderate depression at
baseline; inpatients
RD 0 (0.07, 0.07),
0% versus 0%
Very low
(K 1; n 57)
Pharm 17.01
Phenelzine
versus placebo
Mix of borderline
personality disorder and
schizotypal personality
disorder with axis I
disorders; moderate
depression at baseline;
inpatients
RD 0 (0.05, 0.05),
0% versus 0%
Moderate
(K 1; n 72)
Pharm 17.01
Fluvoxamine
versus placebo
Antidepressants
versus placebo
Various settings
Fluoxetine
versus fluoxetine
olanzapine
Olanzapine
versus fluoxetine
Antidepressants
292
Population
Effect size
Quality of evidence
Number of studies, number of
participants
Forest plot
Olanzapine
versus placebo
Outpatient/community
Haloperidol
versus placebo
RD 0 (0.04, 0.04),
0% versus 0%
Moderate
(K 2; n 126)
Pharm 17.03
Aripiprazole
versus placebo
RD 0 (0.07, 0.07),
0% versus 0%
Very low
(K 1; n 52)
Pharm 17.03
Antipsychotics
versus placebo
Various settings
Loxapine versus
chlorpromazine
Outpatients
Antipsychotics
Fluoxetine
100% axis I disorders
olanzapine versus (mood, substance use,
olanzapine
anxiety, eating);
symptomatic volunteers
Population
Effect size
Quality of evidence
Number of studies, number of
participants
Forest plot
Divalproex
versus placebo
Topiramate
versus placebo
RD 0 (0.06, 0.06),
0% versus 0%
Very low
(K 2; n 86)
Pharm 17.05
Lamotrigine
versus placebo
Symptomatic volunteers
RD 0 (0.1, 0.1),
0% versus 0%
Moderate
(K 1; n 36)
Pharm 17.05
Carbamazepine
versus placebo
Inpatients
RD 0 (0.17, 0.17),
0% versus 0%
Very low
(K 1; n 20)
Pharm 17.05
Anticonvulsants
versus placebo
Various settings
Omega-3
fatty acids
Mild depression
(no diagnosis);
symptomatic volunteers
Considerable heterogeneity
overall result not reportable
Pharm 17.06
Anticonvulsants
294
Population
Effect size/
Quality of evidence
Number of studies, number of
participants
Forest plot
Fluoxetine versus
fluoxetine
olanzapine
Fluoxetine versus
olanzapine
Symptomatic volunteers;
mild depression at baseline
Antidepressants
Antipsychotics
Olanzapine versus Outpatient/community
placebo
Fluoxetine
olanzapine versus
olanzapine
Anticonvulsants
Divalproex versus
placebo
295
6.11
No evidence on the cost effectiveness of pharmacological and other physical treatments for people with borderline personality disorder was identified by the system296
6.12
6.12.1
6.12.1.1
6.12.1.2
6.12.1.3
6.12.1.4
6.13
RESEARCH RECOMMENDATION
6.13.1
What is the effectiveness and cost effectiveness of mood stabilisers on the symptoms
of borderline personality disorder? This should be answered by a randomised
placebo-controlled trial, which should include the medium to long-term impact of
such treatment. The study should be sufficiently powered to investigate both the
effects and side effects of this treatment.
Why this is important
There is little evidence of the effectiveness of pharmacological treatments for people
with personality disorder. However, there have been encouraging findings from smallscale studies of mood stabilisers such as topiramate and lamotrigine, which indicates
the need for further research. Emotional instability is a key feature of borderline
personality disorder and the effect of these treatments on mood and other key features
of this disorder should be studied. The findings of such a study would support the
development of future recommendations on the role of pharmacological interventions
in the treatment of borderline personality disorder.
An additional research recommendation on the development of an agreed set of
outcomes measures for borderline personality disorder can be found in Chapter 5.
297
Management of crises
7.
MANAGEMENT OF CRISES
7.1
INTRODUCTION
People with borderline personality disorder can often present in a crisis; indeed this
is characteristic of many people with the disorder. They present with a range of
symptoms and behaviours, including behavioural disturbance, self-harm, impulsive
aggression, and short-lived psychotic symptoms, as well as with intense anxiety,
depression and anger. As a result they can be regular users of psychiatric and acute
hospital emergency services.
Frequent crisis presentation may induce complacency in assessors who fail to estimate the risk accurately; the context of a persons regular contact with services in a
crisis inoculates them against assessing each presentation in its own right. The challenge is to assess risk and to manage the crisis without acting in ways that are experienced by the patient as invalidating or minimising their problems while, at the same
time, fostering autonomy. In particular, assessors need to avoid interventions that
might cause harm, including undermining a persons autonomy; this needs to be
balanced against the need to intervene. For example, too rapid an admission to hospital may prevent the person from developing skills to manage emotional crises for
themselves, and yet refusal to admit the person may endanger them. Assessors need
to take into account that the emotional reactivity of patients with borderline personality disorder may mask underlying comorbidities such as depression, while it may
also be part of situationally triggered emotional dysregulation that may resolve with
limited intervention.
Medication is commonly started when a patient presents in crisis although there
is no evidence for the use of any specific drug or combination of drugs in crisis
management. In making judgements on the value of psychotropic drugs in the treatment of borderline personality disorder it is important to be aware that there is much
prescribing in crisis settings where the imperative to intervene is very strong, which
can lead to further prescribing. This has the potential for a dangerous collusion
between the patient and the prescriber that should not be fostered if its only gain is
short-term satisfaction that is more than offset by long-term adverse effects from
continuing prescribed medication. Therefore, when medication is used, it should
always be considered in the context of a longer-term treatment plan involving psychological and/or social intervention. Of particular importance is the issue of the patients
capacity to consent to treatment during times of crisis.
7.2
CURRENT PRACTICE
Management of crises
suicide attempts are part of the presentation, or to the police if public disturbance is
part of the picture. Families or carers may be involved in such situations and mental
health professionals may approach them in helping to manage crises, while ensuring
that they are not over-burdened with responsibility. Crisis teams within mental
health services may be called, which enables patients to be offered immediate
support while assessment of risk and review of treatment takes place. Offering
support and regular contact to the patient is probably the commonest intervention
offered in a crisis. On the basis of the crisis evaluation, decisions need to be made to
admit or not to admit the person to hospital, offer immediate daily contact including
home treatment, arrange outpatient care, continue with scheduled treatment, or start
more formal treatment.
7.3
When searching for RCTs of treatments in people with borderline personality disorder (see Chapter 5 and other evidence review chapters for details of the search for
RCTs), none was found in which people had been specifically recruited during a
crisis period. Since crises can both pass and recur quickly in people with borderline
personality disorder, this is not surprising. Also, the nature of crises in this client
group means that there are considerable issues of consent in recruiting people to trials.
This chapter is therefore based on the expert opinion of the GDG (see Chapter 3).
7.4
The overall aim during the management of a crisis is to help the person to return to a
more stable level of mental functioning as quickly as possible without inducing any
harmful effects that might prolong the problems. The persons autonomy should be
maintained as far as possible, their safety and that of others assured, and their
emotions, impulses and behaviours reduced to a manageable level. Supportive and
empathic comments are necessary in the first instance and these may be particularly
beneficial if the initial contact in the crisis is by telephone. Medication use should be
limited, following the general guidance below, and should be only for short-term use.
Specific goals of treatment should be set.
Vignette of a service user accessing services during a crisis
Being faced with someone with borderline personality disorder in crisis can
unfortunately be perceived as quite a daunting prospect for some people. In my
experience, though, it neednt be. Responses dont need to be that profound or
from people with a lot of experience of working with this disorder, they just need
to be human. Despite this, I have often found that responses to me during such
crises were variable and at times unhelpful. However, I have been fortunate
299
Management of crises
enough to have had some very good responses over the period of my disorder that
illustrate this point.
I was experiencing a period of extremely low mood. My psychiatrist who had seen
me through most of my journey had recently retired, I had been raped about 6
months previously, and after a destructive relationship had also been through a
pregnancy and termination. After previously making so much progress, I was deteriorating rapidly in mood. I had cut-off from my psychologist and was withdrawing from work with my CPN. Although most of the time I was too low to care, at
other times I was desperate for connectedness and needed to know that someone
was aware of how desperate I was feeling.
I made contact with the out-of-hours social work team by telephone. This is a service that deals primarily with emergency child, welfare and older adult issues, but
takes over from the adult mental health out-of-hours service after 10pm. Although
most of the social workers are Approved Social Workers and have knowledge of the
Mental Health Act and the issues associated with it, the majority of them have not
had any specific therapeutic training or any specialist personality disorder related
training. The point I am making is that none of them was a skilled therapist with
experience of people with borderline personality disorder.
I phoned them and got through to one of the duty social workers who helped me
to calm myself enough to talk. This was achieved by him remaining calm,
reassuring me and not making me feel that I had limited time or needed to rush.
A few gentle questions helped, not, what I call, big questions such as How can I
help? or Whats happened?, but smaller questions such as I can hear youre
upset, how long have you been feeling like this, do you know why youre
feeling like this? Big questions such as How can I help? or Whats wrong?
always feel to me too overwhelming and too difficult to find a starting point.
It only took a few little questions to get me started and to begin to articulate what
I was feeling. I hadnt spoken to anyone in days so I really appreciated not feeling rushed, pressurised into speaking or sensing that the other person was getting
frustrated with my inarticulateness. Once I began to speak, it became easier to
express my distress with the help of some prompts, some empathy and some help
with articulation when I was struggling to express myself. I didnt need much.
I just needed a sense of connection to another human being, to feel reassured; I
needed to feel that the person cared enough to have some empathy.
I didnt need anything done, nor crisis admission or referral (even though I would
need a more assertive intervention in the weeks to come, that wasnt what I was
looking for or needed at that moment). I didnt even need anyone specialised. I
just needed a caring human response, to hear a voice.
We were on the telephone for only about 30 minutes in total, but it was enough to
help and to hold me through the night. The social worker gave me the option to
ring back again in the night if I needed to, and although I didnt wish to, it helped
me to contain my feelings knowing that the option was there. The other useful
300
Management of crises
outcome of this phone contact was the knowledge that there would be some kind
of follow-up the next morning. The social worker following my phone call sent a
fax to my CPN outlining the details of my contact with a request for my CPN to
ring me to check that I was OK and if any further follow-up was needed. Just
knowing that a follow-up and human contact were in place for the next day makes
such a big difference in helping to contain the intense emotional distress that can
occur with this disorder and stopping situations escalating into admission, crises
or self-harm. On this occasion and during a number of previous situations I didnt
need much from my CPN once he rang; sometimes I would need an extra visit,
but on other occasions the knowledge that the phone call was to take place was
enough to settle me for the time being. Knowing that Id have an opportunity to
talk about the feelings I was struggling with was enough to enable me to manage
until the next scheduled appointment time.
7.4.1
7.5
7.5.1
It is recognised that drug treatments are often considered part of the emergency
management of crises, sometimes including self-harm and violence, however no
specific treatments for borderline personality disorder or for particular symptom clusters are recommended.
301
Management of crises
Moreover, no drug has UK marketing authorisation for the treatment of borderline
personality disorder so the continued prescribing of medication in people with
borderline personality disorder should be undertaken with caution and normal
prescribing practice for patients at risk of self-harm should be taken into account.
Prescribing should, wherever possible, be limited to the short-term management of
crises using sedatives (or to the treatment of comorbid conditions). Some advice is
available on the use of medication off licence see Use of licensed medicines for
unlicensed applications in psychiatric practice published by the Royal College of
Psychiatrists (http://www.rcpsych.ac.uk/files/pdfversion/cr142.pdf).
There is no evidence that people with borderline personality disorder, or other
personality disorders, need higher doses of drugs than other patients. Dosage should
be kept within the normal therapeutic range.
Drugs prescribed during a crisis may be continued inadvertently after the symptoms
that presented during the crisis have subsided. This may lead to service users taking
more than one drug for an extended period of time there is evidence that people with
borderline personality disorder are prescribed inappropriate combinations and an excessive number of psychotropic drugs at any one time (Sansone et al., 2003; Zanarini et al.,
2004a). Any patient, whatever their current diagnosis, who describes a treatment history
of polypharmacy with limited beneficial response should have their diagnosis reviewed
with consideration given to the possibility of borderline personality disorder.
7.5.2
7.5.2.1
7.5.2.2
14Sedative
antihistamines are not licensed for this indication and informed consent should be obtained and
documented.
302
Management of crises
7.5.2.3
7.5.2.4
7.5.2.5
7.6
MANAGEMENT OF INSOMNIA
7.6.1
Introduction
Although insomnia can be a problem for people with borderline personality disorder,
there is nothing specific to its management in relation to the disorder. Therefore,
general advice relevant to anyone with sleep problems can be given, including advice
on sleep hygiene, such as avoiding activity or caffeine near to bedtime.
15Ibid.
303
Management of crises
7.6.2
7.6.2.1
Provide people with borderline personality disorder who have sleep problems with general advice about sleep hygiene, including having a bedtime
routine, avoiding caffeine, reducing activities likely to defer sleep (such as
watching violent or exciting television programmes or films), and employing activities that may encourage sleep.
7.6.3
Some people with borderline personality disorder have found the occasional use of
sedative antihistamines useful when sleep disturbance has been associated with
emotional instability.
There is also a NICE Technology Appraisal on the use of newer hypnotic drugs in
managing insomnia (NICE, 2004b). This recommended:
1.1 When, after due consideration of the use of non-pharmacological measures,
hypnotic drug therapy is considered appropriate for the management of severe
insomnia interfering with normal daily life, it is recommended that hypnotics
should be prescribed for short periods of time only, in strict accordance with their
licensed indications.
1.2 It is recommended that, because of the lack of compelling evidence to distinguish
between zaleplon, zolpidem, zopiclone or the shorter acting benzodiazepine
hypnotics, the drug with the lowest purchase cost (taking into account daily
required dose and product price per dose) should be prescribed.
1.3 It is recommended that switching from one of these hypnotics to another should
only occur if a patient experiences adverse effects considered to be directly
related to a specific agent. These are the only circumstances in which the drugs
with the higher acquisition costs are recommended.
1.4 Patients who have not responded to one of these hypnotic drugs should not be
prescribed any of the others.
7.6.4
7.6.4.1
For the further short-term management of insomnia follow the recommendations in Guidance on the use of zaleplon, zolpidem and zopiclone for
the short-term management of insomnia (NICE technology appraisal
guidance 77). However, be aware of the potential for misuse of many of
the drugs used for insomnia and consider other drugs such as sedative
antihistamines.
304
8.
8.1
INTRODUCTION
Concerns have repeatedly been expressed about the quality of services for people with
personality disorder. In 2003, the Department of Health in England highlighted the problems that many people with personality disorder face when trying to access appropriate
care in primary or secondary services (Department of Health, 2003). Consequently, the
department set standards for delivering services to people with personality disorder in
England that aimed to ensure that people with the disorder (including borderline personality disorder) would be able to access general and specialist mental health services.
Mental health trusts in England are now expected to take responsibly for meeting the
needs of people with personality disorder with an emphasis placed on local expertise,
suitable skills and multi-agency working (Department of Health, 2006).
However, a significant challenge for the NHS is that the evidence on which to base
recommendations for guiding the development of services for people with personality disorder is poor. General principles, based on expert opinion, provide an approach
to working with people with personality disorder (Holmes, 1999; Bateman & Tyrer,
2004) and suggest how general mental health services can work more effectively with
people with such problems (Sampson et al., 2006). However, research conducted in
this field has generally focused on delivering a specific treatment and not service
configuration or organisation. To address this problem the Department of Health in
England funded a number of new services for people with personality disorder and
commissioned research aimed at identifying organisational, therapeutic and other
factors that service users and providers believe result in high quality care for people
with personality disorders (Crawford et al., 2007).
Lessons learned from the evaluation of these new services suggest that because of
the complexity of personality disorder most services should offer more than one type
of intervention, make efforts to encourage patient choice and active participation,
have a coherent model for understanding personality disorder, have clear systems of
communication, make sure the person with a personality disorder is valued within the
service, and ensure that services have facilities to help a person in a crisis (Crawford
et al., 2008).
This clinical guideline builds on these findings and makes recommendations for
service configuration and organisation for the treatment and care of people with
borderline personality disorder. A systematic review of the evaluable evidence was
undertaken. Where possible, current evidence for service provision for people with
borderline personality disorder that could help service providers and practitioners
determine what type of services maximise effectiveness and safety and minimise
harm for the delivery of specific treatments will be presented.
305
Topics considered
This chapter looks at the different types of services involved in the delivery of care
for people with borderline personality disorder, in particular:
the role of specialist services
risk factors for suicide
the role of inpatient care
a care pathway for people with borderline personality disorder
special considerations for people with learning disabilities.
8.1.2
In order to make recommendations about services for people with borderline personality
disorder, the GDG asked a series of clinical questions, which are reproduced in the
reviews that follow. For all reviews summary study characteristics and descriptions of the
studies are given in tables below but more information is available in Appendix 16.
Similarly, summary evidence profiles are given in tables below with the full profiles in
Appendix 18 and the forest plots in Appendix 17. Reviewed studies are referred to by
first author surname in capitals plus year of publication. Full references for these studies
are in Appendix 16.
8.2
In order to make recommendations on the role of specialist services for people with
borderline personality disorder the GDG asked two linked clinical questions:
What type of services maximise effectiveness and safety and minimise harm
(taking into account long-term outcomes) for the delivery of specific treatments
for people with borderline personality disorder?
306
What is the role of specialist services (including community-based) in the mediumand long-term management of people with borderline personality disorder?
The most appropriate research design to answer these questions is the RCT, and
therefore the evidence base reviewed comprised all available RCTs undertaken in
people with a diagnosis of borderline personality disorder. However, since for some
more recently developed therapies there are no RCTs, evidence from non-randomised
trials was sought.
8.2.1
Evidence search
The review team undertook a search for all RCTs in borderline personality disorder.
This did not yield any studies that specifically made comparisons of services in this
client group. The review team therefore checked the literature for serious mental
illness that had been reviewed for the NICE guideline on schizophrenia (NCCMH,
2002) and updated for the NICE guideline on bipolar disorder (NCCMH, 2006).
None of the studies included in this review involved high percentages of people with
a diagnosis of borderline personality disorder (although a number of studies did not
report axis II diagnoses) (see Table 113). The review team therefore undertook a new
search for RCTs in this area in any personality disorder.
5% personality disorder
DRAKE1998
ESSOCK1995
No axis II
JERRELL1995
Axis I only
MORSE1997
Axis I only
QUINLIVAN1995
DECANGAS1994
LAFAVE1996
AUDINI1994
No axis II
BOND1988
No personality disorder
BOND1990
5% personality disorder
DEKKER2002
FEKETE1998
HAMPTON1992
42% schizophrenia
HERINCKX1997
LEHMAN1997
Axis I only
MORSE1992
Axis I only
QUINLIVAN1995
ROSENHECK1993
8% personality disorder
TEST1991
Personality disorder
FENTON1998
HOULT1981
JOHNSON2005
MUIJEN1992
PASAMANICK1964
100% schizophrenia
STEIN1980
308
100% schizophrenia
1% personality disorder (n 1)
100% schizophrenia
Day hospitals
Day hospitals versus admission
CREED1990
CREED1997
DICK1985A
HERZ1971
9% personality disorder
KRIS1965
SLEDGE1996A
100% schizophrenia
MELTZOFF1966
TYRER1979
WELDON1979
100% schizophrenia
309
Date searched
Update searches
None undertaken
Study design
RCT
Patient population
Treatments
Outcomes
Any
No studies were found that were relevant. The GDG therefore developed a care
pathway for people with borderline personality disorder based on expert consensus
(see section 8.5).
8.3
8.3.1
Introduction
Suicide attempts are a defining feature of borderline personality disorder and form
part of the diagnostic criteria. Suicide attempts differ from self-harm, which has a
different pattern and purpose, for example, to relieve negative emotions. Self-harm,
such as superficial cutting to the arms, is usually not intended to be fatal, although
cutting can, of course, be serious. Suicide attempts, however, refer to acts that have
suicidal intent.
A relatively large proportion of people with a diagnosis of borderline personality
disorder complete suicide, with some estimates as high as 10% (Paris, 2004a) and 49%
in inpatients (Fyer et al., 1988). However, identifying those at high risk is difficult.
310
8.3.3
The electronic databases searched are given in Table 115. Details of the search strings
used are in Appendix 7.
Date searched
Update searches
March 2008
Study design
Cohort studies
Patient population
Both studies specifically of people with borderline personality disorder and studies including non-specific psychiatric diagnoses were included. Some studies
included only those with a recent suicide attempt and some compared those with a
suicide attempt with those without. A few studies were of young people; these
are reviewed in a separate section below. See Table 116 for the summary study
characteristics.
Studies that did not look at specific risk factors were excluded. CHANCE2000
was not relevant because it is a psychodynamically-oriented study looking at relational patterns in inpatients with borderline personality disorder comparing those who
had made a suicide attempt with those who had not.
311
312
(1) CORBITT1996
(2) SOLOFF2000
(1) BARBER1998
(2) YEN2004
(3) YEN2005
(4) ZISOOK1994
(1) 135/51
(2) 621/64
(3) 489/NA
(4) 1000/52
(1) 38
(2) NA
(3) 1845
(4) 34
Study IDs
N/% female
(1) 1864
(2) 32
(1) 102/55
(2) 158/65
2 studies (260)
General psychiatric
populations or non-specific
personality disorder
34
180/57
BERK2007
1 study (180)
Studies comparing
suicidality in those
with borderline
personality disorder
and those without
(1) unclear
(2) 29
(3) 33
(4) NA
(5) 27
(1) 214/unclear
(2) 180/81
(3) 82/83
(4) 100/NA
(5) 108/76
(1) BRODSKY1997
(2) FYER1988
(3) LINKS2007
(4) PARIS1989
(5) SOLOFF1994
5 studies (684)
Studies of people
with borderline
personality
disorder
Table 116: Summary study characteristics of studies of risk factors for suicide in people with borderline personality disorder
313
Setting
(2) 13%
Axis I/II
disorders
(1) Inpatients
(2) Inpatients
Emergency
department
patients following
suicide attempt
Continued
(1)(3) Inpatients
(4) Former
outpatients
(5) Inpatients
(1)(5) borderline
personality disorder
314
NA not available.
Suicidality
General psychiatric
populations or non-specific
personality disorder
1 suicide attempt
Studies comparing
suicidality in those
with borderline
personality disorder
and those without
Studies of people
with borderline
personality
disorder
Study descriptions
BARBER1998
This is a US-based study of 135 people chosen at random from adult psychiatric
admissions to a psychiatric division of a university medical centre. The study aimed to
collect information about aborted suicide attempts using a 30-minute semi-structured
interview based on a questionnaire devised for the study. Diagnoses were determined
from hospital records after discharge.
Factors that were statistically significantly associated with aborted suicide
attempts included younger age (mean 35 years compared with mean 41 years) and
borderline personality disorder.
YEN2004
This 2-year prospective study of 621 people is part of the Collaborative Longitudinal
Personality Disorders Study (Gunderson et al., 2000). The study included people with
a range of personality disorders and a control group of people with major depressive
disorder and no personality disorder. The largest group had a diagnosis of borderline
personality disorder and were the focus of this paper. Just over 15% of the sample
(n 95) reported suicidal behaviour and 9.3% (n 58) made a suicide attempt.
People with borderline personality disorder made up 79% and 78% of these groups.
The authors found that suicidal behaviour was predicted by affective instability,
identity disturbance and impulsivity, but not by major depressive disorder, substance
use disorder or childhood sexual abuse. Suicide attempts were predicted by affective
instability and childhood sexual abuse.
YEN2005
This study followed 489 participants for 3 years. All participants had a diagnosis of a
personality disorder (schizotypal; borderline personality disorder; avoidant;
obsessive-compulsive) and were compared with a comparison group of people with
major depressive disorder but no personality disorder. Sixty-one people made a
suicide attempt; 24 of these people made multiple attempts. All reported at least one
negative life event, with those relating to love-marriage or crime-legal factors being
positively associated with suicide attempts. The study did not give results for different personality disorders separately so it is unclear whether the findings apply specifically to people with a diagnosis of borderline personality disorder.
ZISOOK1994
This is a US-based study of 1000 consecutive attendances at a psychiatric outpatient
clinic. Participants past suicidal behaviour was assessed using a self-report questionnaire. DSM-III-R diagnoses were made based on a psychiatric interview.
The study found that patients with borderline personality disorder and comorbid major depressive disorder were most likely to have current thoughts of death,
315
8.3.5
Study descriptions
CORBITT1996
This study recruited 102 patients with depression admitted to a university-based
private psychiatric hospital in the US. All patients admitted to the hospital were
screened for major depressive disorder (DSM-III-R) and those that met criteria were
asked to participate in the study. Participants were aged between 18 and 64 years,
with just over half being female. Mean baseline HRSD scores were 29.6 (SD 7.4).
Axis II disorders were assessed towards the end of the admission period. Suicidality
was assessed in a structured interview. Patients with comorbid borderline personality
disorder and those without were then compared.
Compared with those with other personality disorders and those with no personality disorder, those with comorbid borderline personality disorder were more likely
to have made three or more suicide attempts and to have been younger when they
made their first attempt. They were also more likely to have had a higher severity of
suicidal ideation before the index hospitalisation (measured retrospectively), to have
been younger at their first psychiatric admission and to be women.
SOLOFF2000
This study recruited participants from consecutive admissions to an adult inpatient
service including only those with a diagnosis of borderline personality disorder
and/or major depressive disorder. Data on suicidal behaviour were collected using a
semi-structured interview. The study included 158 people, 20% with borderline
personality disorder, 31% with borderline personality disorder plus comorbid major
depressive disorder, and 49% with major depressive disorder only. The major depressive disorder only group were significantly older than the other two groups (mean 41
years versus 26 years and 30 years respectively).
316
8.3.6
Study description
BERK2007
This study examined patients who had made a recent suicide attempt (recruited in an
emergency department) comparing those with a diagnosis of borderline personality
disorder with those without. In all 180 people were recruited, of whom 36% (n 65)
had a diagnosis of borderline personality disorder. Baseline measures were taken up
to 3 weeks after the index suicide attempt using both clinician-rated and self-rated
measures, with psychiatric diagnoses made using SCID for DSM-IV. The trial was
part of an RCT of CT (Brown et al., 2005).
The study found that those with a diagnosis of borderline personality disorder
showed greater overall psychopathology than those without, including increased
depression and hopelessness, and more axis I diagnoses, particularly bipolar I disorder and PTSD. In addition, this group had more psychiatric hospitalisations and had
received more psychiatric treatment than those without a diagnosis of borderline
personality disorder. They were also more likely to have experienced childhood
physical and sexual abuse, have had more lifetime suicide attempts and report feelings of regret that the suicide attempt had failed. They also had poorer problemsolving skills.
8.3.7
Clinical summary
This study confirms that those with a diagnosis of borderline personality disorder
who make a suicide attempt are likely to have greater psychopathology than others
making a suicide attempt.
317
Study descriptions
BRODSKY1997
This study examines pooled data from two studies of newly admitted inpatients with
borderline personality disorder in order to generate sufficient data to examine suicidality. Axis I diagnoses were determined using DSM-III-R based on structured clinical interviews, while axis II diagnoses were determined by the Personality Disorder
Examination in one study and DSM-III-R in the other. A detailed history of suicidal
behaviour was taken.
The study reported that in people with borderline personality disorder, when lifetime
depression and substance abuse were controlled for, impulsivity and the presence of a
history of abuse significantly correlated with the number of previous suicide attempts.
FYER1988
This study reported on 180 patients who were selected by reviewing the records of
consecutive inpatients who had been given a diagnosis of borderline personality
disorder. All data were collected by chart review.
The study found that 65% had a concurrent affective disorder, 70% concurrent
substance use disorder and 43% had dual diagnoses. In addition, 19% had no history
of suicidal behaviour, 32% had made suicidal gestures and 49% had made serious
attempts. Those with dual diagnoses had a higher rate of serious attempts and a lower
rate of suicidal gestures than those with no concurrent diagnosis. Those with concurrent affective disorder tended to have a higher rate of serious attempts than either
those with no concurrent disorder and those with a substance use disorder. Fewer of
those with a concurrent substance use disorder, but no affective disorder, had made
suicidal gestures compared with those with no concurrent diagnosis.
LINKS2007
This study recruited participants with a diagnosis of borderline personality disorder
who had made at least two suicide attempts (one in the previous 2 years) and followed
them prospectively for 1 month. Potential participants were specifically excluded if
they had current major depressive disorder, a psychotic disorder, active substance
dependence, cyclothymia or bipolar I disorder.
The study used experience sampling methodology to sample subjective experience randomly using devices such as telephone bleepers and pagers to contact participants who were then asked to complete various measures. These included affective
instability, which was measured in various ways such as present or absent based on
SCID-II affective instability item and affect lability based on the subscale of the
Dimensional Assessment of Personality Pathology - Basic Questionnaire. Suicide
ideation was measured using the Scale for Suicide Ideation and suicide behaviour
using the Suicidal Behaviors Questionnaire.
The study found a positive correlation between negative mood intensity and suicidal ideation and behaviour.
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8.3.9
Given that suicidal ideation is a diagnostic criterion for borderline personality disorder, it is not surprising that borderline personality disorder itself is a risk factor for
suicide attempts, particularly when comorbid with major depressive disorder. Those
people who complete suicide who have a diagnosis of borderline personality disorder
tend to have made more previous suicide attempts. Patients are likely to have greater
psychopathology than other people who attempt suicide, including impulsivity, presence of a history of abuse, comorbid affective disorder and dual diagnosis (affective
disorder and substance use disorder).
These findings suggest that the presence of comorbid affective disorders should
be carefully assessed in patients with a diagnosis of borderline personality disorder.
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8.3.10
8.3.10.1
8.4
8.4.1
Introduction
People with borderline personality disorder have been shown to be high users of inpatient services (Bender et al., 2001). However, despite frequent use of inpatient admissions in the management and treatment of people with borderline personality
disorder, the effectiveness of admission as an intervention is uncertain. This is largely
because of the lack of good quality evidence evaluating the impact inpatient care has
on the outcome of borderline personality disorder.
8.4.2
In order to make recommendations about the role of inpatient care in the treatment of
borderline personality disorder the GDG asked two clinical questions:
What is the role of inpatient (acute, forensic) care in the management of people
with borderline personality disorder?
Is long-term inpatient care in the treatment of borderline personality disorder
effective?
8.4.3
Evidence search
Since no RCTs comparing inpatient care with other forms of care in people with
borderline personality disorder were identified in the general search for RCTs undertaken at the beginning of the guideline development process (described elsewhere, for
320
Date searched
Update searches
March 2008
Study design
None specified
Patient population
Topic
Inpatient care
Outcomes
None specified
Five studies were found, of which three were included (see Table 118).
Table 118: Inpatient studies
Inpatient studies
No. trials (Total participants)
5 studies
Study ID
(1) ANTIKAINEN1992
(2) ANTIKAINEN1994
(3) ANTIKAINEN1995
N /% female
(1) 66/42
(2) 66/44
(3) 62/40
Mean age
(1)(2) 32
(3) 36
Setting
Two studies were excluded because they did not contain any data
(JAKUBCZYK2001; JONES1989).
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Study descriptions
ANTIKAINEN1992
This study, carried out in a specialised psychiatric ward of a hospital in Finland,
reported the impact of an inpatient programme on depression and anxiety symptoms
in 66 patients. There were 38 male and 28 female inpatients with a mean age of 32
(range 15 to 56 years). The authors report that 32% had a diagnosis of borderline or
other personality disorder. The treatment programme consisted of dynamic
psychotherapy and psychopharmacological treatment. Patients received 45 minutes of
individual dynamic psychotherapy and group therapy sessions twice a week. In addition psychotropic drugs were used in accordance with clinical practice. Patients were
in hospital for an average of 88 days (range 21 to 296 days) and participated in an
average of 25 therapy sessions during this period. The authors report significant
reductions in anxiety, depression and other psychiatric symptoms including suicidal
thoughts.
ANTIKAINEN1994
This study was carried out in a psychiatric ward of a hospital in Finland specialising
in the psychotherapeutic treatment of borderline personality disorders. The study
aimed to identify factors predicting the outcome of psychiatric hospital treatment
in 66 patients. There were 37 male and 29 female inpatients with a mean age of 32
(range 15 to 56 years). Participants baseline diagnoses are not reported, however the
authors report that at the end of treatment 29% of participants had a personality disorder diagnosis. The treatment programme consisted of individual and group therapy
sessions twice a week, including family members when necessary, ward meetings,
committees and creative activities. Psychotropic medication was also used in accordance with clinical practice. Patients were in hospital for an average of 88 days (range
21 to 296 days). The outcome reported in this study was depressive symptoms as
measured by the BDI and HDRS. A significant association was found between 14
variables and the outcome of treatment. For example, a good outcome was associated
with suicidality and tension expressed by the patient on admission, whereas a poor
outcome was associated with expressed delusions. The authors also report that participants taking benzodiazepines showed a better outcome as measured by the BDI and
HDRS.
ANTIKAINEN1995
This study reports a 3-year follow-up of inpatients treated on a psychiatric ward in
Finland specialising in the psychotherapeutic treatment of borderline personality
disorder. Sixty-two patients were included in this study, 37 male and 25 female,
with a mean age of 36 years at baseline. The authors report that 32% of patients
were diagnosed with borderline or other personality disorder. The treatment
322
323
8.5
CARE PATHWAY
8.5.1
Introduction
Since no studies had been found that were relevant to answering clinical questions on
the role of specialist services (see section 8.2), the GDG developed a care pathway
for people with borderline personality disorder based on expert consensus. An important issue in providing services for people with borderline personality disorder is to
support staff in their work, since this client group can be challenging to work with.
The GDG therefore considered the following clinical question as part of their consensus work on a care pathway:
How can healthcare professionals involved in the care of people with borderline
personality disorder best be supported?
This was answered based on the consensus view of the GDG and is discussed below
in the section on teamwork and communication. Staff support is also included in the
recommendations on psychological interventions in Chapter 5.
8.5.2
Experiences of people with borderline personality disorder (see also Chapter 4), their
relatives and friends, and those of healthcare professionals, suggest that in addition to
the type of interventions that are offered, careful consideration also needs to be given
to the manner in which these are delivered. The general principles outlined here aim
to promote a constructive therapeutic relationship and balance efforts to meet a
persons needs while promoting self-efficacy. These general principles are important
throughout primary, secondary and specialist services.
Active participation
People with borderline personality disorder often find it hard to cope at times of
crisis, and may look to others to take responsibility for their needs. While service
providers may feel under pressure to try to do this, this approach may inadvertently
undermine a persons limited capacity to care for themselves. It is therefore important
to try to ensure that people with borderline personality disorder remain actively
involved in finding solutions to their problems, even during crises.
An assumption of capacity
While people with borderline personality disorder may struggle to make informed
choices, especially at times of crisis, efforts to coerce a person to do what others feel
is in their best interests may also undermine a persons limited self efficacy. Instead,
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8.5.3.1
8.5.3.2
8.5.4
Primary care
In addition to attending to the physical health needs of people with borderline personality disorder, primary care workers may encounter people with the disorder when
they present with emotional distress, episodes of self-harm and psychosocial crises.
An awareness of borderline personality disorder and the principles that underpin its
management may help primary care services to contain a person within a primary
care setting and also guide decisions about when to refer to secondary care.
Awareness of borderline personality disorder
People with borderline personality disorder may present to primary care with
emotional distress, including anxiety, fear of abandonment and feelings of emptiness.
Other indications of the disorder include recurrent presentations with psychosocial
crises, long-standing suicidal ideation, repeated self-harm, and marked interpersonal
problems with reduced social functioning. In addition to helping guide the management of people with borderline personality disorder, an awareness of this disorder
may help ensure that inappropriate strategies such as polypharmacy are avoided.
Many people with borderline personality disorder experience other intra-psychic and
interpersonal problems such as impulsivity, sensitivity to criticism and dependence on
others; these factors can readily lead to unnecessary and sometimes risky prescription
of drugs.
8.5.5
8.5.5.1
326
8.5.6.1
When to refer
Most people with borderline personality disorder can be managed within primary
care isolated crises do not in themselves indicate a need for referral to secondary
care services. Some people with borderline personality disorder have contact with
multiple services, and consideration should be given to the support that is already
being provided before they are referred to another service.
Referral to secondary care should be considered when there is uncertainty about
diagnosis. Specific indicators include repeated self-harm, persistent risk-taking and
marked emotional instability. Risk of harm to self or others is an important indication
for referral to secondary care services (see also the NICE self-harm guideline
[NCCMH, 2004]). When the diagnosis is established and the person is motivated to
change, consideration should be given to direct referral to psychological treatment
services.
Where dedicated personality disorder services exist they should be able to provide
advice and support for those working with people with personality disorder in
primary care. They may also be willing to take referrals directly from primary care,
without the need for assessment by generic mental health teams.
8.5.7
8.5.7.1
Consider referring a person with diagnosed or suspected borderline personality disorder who is in crisis to a community mental health service when:
their levels of distress and/or the risk to self or others are increasing
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8.5.8
their levels of distress and/or the risk to self or others have not subsided
despite attempts to reduce anxiety and improve coping skills
they request further help from specialist services.
8.5.9
Secondary care
Secondary care services are well placed to understand the extent of the interpersonal
problems experienced by a person with borderline personality disorder and to assess
their mental health and social needs. They should also be able to provide psychologically-informed management of the persons problems and work with the person to
design and implement an appropriate care plan. Where indicated, secondary care
services can facilitate referral to psychological or specialist personality disorder services and may be able to support the work of such services by coordinating care and
providing additional support at times of crisis. A community mental health service,
such as a CMHT, should be responsible for routine assessment, treatment and
management of people with borderline personality disorder.
Assessment
When assessing borderline personality disorder in secondary care it is important to
take a full history, which may need to include an assessment of comorbid mental
disorders, such as substance misuse and eating disorders. A full assessment of
personality functioning, coping strategies, strengths and vulnerabilities should be
included.
The assessment process can be distressing for people with borderline personality
disorder. Therefore it is important that questions about early childhood are handled
sensitively as it may reveal experiences of neglect or abuse, and that support is
provided to the person during this process. Similarly care should be taken when
discussing diagnosis. Widespread misunderstanding of the label personality disorder means that some services prefer to use other terms, such as interpersonal problems and complex cases to describe this condition. Where the term borderline
329
8.5.10.1
8.5.10.2
Risk management
Because people with borderline personality disorder often experience suicidal
ideation, it is important to distinguish acute from chronic risks. Suicidal ideation and
self-harm may arise for a variety of reasons. They may represent an attempt to
manage unbearable feelings, to end a dissociated state, to elicit care, to express anger
and punish someone, or as an attempt to end life.
Chronic risk refers to the long-term risk of self-harm and suicide inherent in
borderline personality disorder. Acute risks are those which may arise in the context
of crises and further increase the risk of suicidal behaviour. A chronic risk may be
made acute by the response of services. Service users may be at more risk when practitioners are seen to be giving up, particularly if this is at the end of a series of
attempts to help them.
In addition to self-harm, people with borderline personality disorder may undertake other high-risk behaviour such as evoking negative responses from others or
high-risk sexual behaviour. It is important that these risks are identified and the level
of risk posed to the service user and others assessed. Risk assessment should always
be undertaken in the context of a needs assessment.
Factors that may trigger heightened risk to self or others should be documented as
part of a risk management plan, which should be shared with others involved in the
persons care. It is important to involve the person actively in the development of this
plan, for instance by helping them try to identify alternatives to high risk behaviour
and to think about the consequences of their actions. Efforts to persuade or coerce the
person into pursuing an alternative course of action may be counterproductive. The
plan should address both chronic and acute risks and be explicitly related to the overall treatment plan to ensure continuity and coherence.
Because risk factors and triggers vary among people with borderline personality
disorder, it is important that a clinician is cautious when assessing a service user who
is not well known to them. It is also important to avoid being over-controlling or
dismissive, and to underestimate the seriousness of the risk, particularly in people
who undergo frequent suicidal crises. It is, therefore, also important to involve other
331
8.5.11
8.5.11.1
8.5.11.2
8.5.11.3
Psychologically-informed management
Psychologically-informed management involves helping a person with borderline
personality disorder reach a better understanding of their emotions and feelings and
develop healthy coping strategies. Encouraging the person to make changes could
help to mitigate the impact of their difficulties. For instance, helping someone to identify and pursue pleasurable activities may start to help them to counter chronic feelings of emptiness or low self-esteem.
When developing a care plan it is important to involve the person with borderline
personality disorder with support and advice from a multi-disciplinary team. It is
useful to include a crisis plan in which triggers for crises and steps that service users
can take at these times are specified. In preparing the care plan it is also helpful to set
short- and long-term goals that the service user would like to achieve. It is important
that these goals are realistic and that the steps that the service user and others may
need to take in order to try to achieve these goals are clearly specified. In order for
service providers to help ensure that the services provided are appropriate for the
service users needs, the care plan needs to be regularly reviewed (it may be beneficial to include significant others in the review if the service user agrees).
People with borderline personality disorder may be in contact with a variety of
health and social care professionals as well as people working in voluntary sector
332
8.5.12
8.5.12.1
8.5.12.2
8.5.13
8.5.13.1
Before starting treatment for a comorbid condition in people with borderline personality disorder, review:
the diagnosis of borderline personality disorder and that of the comorbid condition, especially if either diagnosis has been made during a
crisis or emergency presentation
334
8.5.14
8.5.14.1
8.5.15
8.5.15.1
8.5.15.2
336
8.5.15.4
When providing psychological treatment to people with borderline personality disorder as a specific intervention in their overall treatment and care,
use the CPA to clarify the roles of different services, professionals providing psychological treatment and other healthcare professionals.
When providing psychological treatment to people with borderline personality disorder, monitor the effect of treatment on a broad range of
outcomes, including personal functioning, drug and alcohol use, self-harm,
depression and the symptoms of borderline personality disorder.
8.5.16
8.5.16.1
When considering drug treatment for any reason for a person with borderline personality disorder, provide the person with written material about
the drug being considered. This should include evidence for the drugs
effectiveness in the treatment of borderline personality disorder and for any
comorbid condition, and potential harm. For people who have reading
difficulties, alternative means of presenting the information should be
considered, such as video or DVD. So that the person can make an
informed choice, there should be an opportunity for the person to discuss
the material.
8.5.17
8.5.17.1
8.5.17.2
8.5.17.3
8.5.17.4
8.5.18
Specialist services
Introduction
A number of specialist services for people with personality disorder have been established following an initiative from the Department of Health (2003), which carries the
expectation that all trusts will develop expertise in this area. Specialist personality
338
8.5.19
8.5.19.1
8.5.19.2
8.5.19.3
340
8.5.19.4
8.5.19.5
8.6
RESEARCH RECOMMENDATION
8.6.1
8.6.1.1
What is the best care pathway for people with borderline personality
disorder?
A mixed-methods cohort study examining the care pathway of a representative
sample of people with borderline personality disorder should be undertaken. Such a
study should include consideration of factors that should guide referral from primary
to secondary care services, and examine the role of inpatient treatment. The study
should examine the effect that people with borderline personality disorder and service-level factors have on the transfer between different components of care and
include collection and analysis of both qualitative and quantitative data.
Why is this important
The development of a care pathway for people with borderline personality disorder
would help to ensure that available resources are used effectively and that services are
suited to their needs. Service provision for people with borderline personality
disorder varies greatly in different parts of the country, and factors that should be
considered when deciding the type and intensity of care that people receive are poorly
understood. A cohort study in which qualitative and quantitative data from service
users and providers are collected at the point of transfer to and from different parts of
the care pathway would help to inform the decisions that people with borderline
personality disorder and healthcare professionals have to make about the type of
services that people receive.
8.7
8.7.1
Introduction
There has been a lack of conceptual clarity about the diagnosis of personality disorders
for people with learning disabilities highlighted by a significant blurring of the boundaries between personality, psychiatric and behaviour disorders for this population.
A review of prevalence studies revealed a wide variation in the prevalence
of borderline personality disorder among people with learning disabilities, from
1 to 91% in community settings and 22 to 92% in hospital populations (Alexander
& Coorey, 2003). Although the justification for this remains unclear, methodological flaws have been attributed to these large variable figures of prevalence
(Torr, 2003).
342
8.7.2
Studies were sought from the citations downloaded in the search for RCTs undertaken in
people with borderline personality disorder, which are described in the other evidence
chapters. Since no studies were found, an additional search for any primary research in
people with learning disabilities and borderline personality disorder was undertaken.
This search was broadened to search for studies on any personality disorder. Information
about the databases searched and the inclusion/exclusion criteria used are in Table 119.
Table 119: Databases searched and inclusion/exclusion
criteria for clinical evidence
Electronic databases
Date searched
Study design
Patient population
Interventions
Any
Outcomes
Studies considered
No relevant studies were found from the search undertaken. The GDG included a
member with specific expertise in this client group who advised on recommendations
for consensus opinion.
8.7.4
There is very little information relating to personality disorder and response to treatment and management (Lindsay, 2007). Case studies have described pharmacological and behaviour interventions in three individuals with borderline personality
disorder and learning disabilities (Mavromatis, 2000) and Wilson (2001) postulated
a four-stage model based upon DBT. However, the evidence base is yet to emerge.
In view of this, there is no reason why people with borderline personality disorder
who have mild learning disabilities should not be treated in the same way as other
people with a diagnosis of borderline personality disorder and have full access to
mainstream services. Clinicians should have access to specialist advice when assessing and diagnosing borderline personality disorder in people with mild learning difficulties. Those with moderate or severe learning difficulties should not normally be
diagnosed with borderline personality disorder, but, if their behaviour and symptoms
suggest borderline personality disorder, they should be referred for specialist assessment and treatment.
8.7.5
8.7.5.1
When a person with a mild learning disability presents with symptoms and
behaviour that suggest borderline personality disorder, assessment and
diagnosis should take place in consultation with a specialist in learning
disabilities services.
When a person with a mild learning disability has a diagnosis of borderline
personality disorder, they should have access to the same services as other
people with borderline personality disorder.
When care planning for people with a mild learning disability and borderline personality disorder, follow the Care Programme Approach (CPA).
Consider consulting a specialist in learning disabilities services when
developing care plans and strategies for managing behaviour that
challenges.
People with a moderate or severe learning disability should not normally
be diagnosed with borderline personality disorder. If they show behaviour
and symptoms that suggest borderline personality disorder, refer for
assessment and treatment by a specialist in learning disabilities services
8.7.5.2
8.7.5.3
8.7.5.4
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8.8.1
8.8.1.1
Ensure that people with borderline personality disorder from black and
minority ethnic groups have equal access to culturally appropriate services
based on clinical need.
When language is a barrier to accessing or engaging with services for
people with borderline personality disorder, provide them with:
information in their preferred language and in an accessible format
psychological or other interventions in their preferred language
independent interpreters.
8.8.1.2
345
9.
9.1
INTRODUCTION
This guideline uses the term young people to refer to those aged under 18 years as
people of this age prefer this descriptor to the term adolescent.
There are very few studies of the prevalence of borderline personality disorder in
young people, but two suggest that the disorder affects between 0.9 to 3% of the
community population of those aged under 18 years (Lewinsohn et al., 1997;
Bernstein et al., 1993). Employing lower symptom thresholds results in an increase
to between 10.8 to 14% (Bernstein et al., 1993; Chabrol et al., 2001). Chanen and
colleagues (2004) cite data suggesting a prevalence rate of 11% in adolescent outpatients. A more recent study by the same group suggests a rate of 22% in outpatients
(Chanen et al., 2008b). Grilo and colleagues (2001) report a prevalence rate of 49%
in adolescent inpatients. Further studies are needed before firm conclusions can be
drawn about prevalence.
Adolescence is a period of major developmental transitions physically, psychologically and socially. During this period young people experience emotional distress,
frequent interpersonal disruptions and challenges in establishing a sense of identity.
Consequently, young people with borderline personality disorder may experience a
minimisation or dismissal of their difficulties from staff, their families or from their
wider social circle, who attribute their problems to the typical stresses and strains of
the adolescent transition. This may preclude access to appropriate help for their difficulties. However, many clinicians are reluctant to diagnose borderline personality
disorder in young people because of a number of factors: uncertainties about whether
personality disorder can be diagnosed in this age group; the appropriateness of the
diagnosis at a time of major developmental change characterised by some of the
behaviours within the diagnosis; and possible negative consequences of the diagnostic label. Many clinicians also do not believe that making the diagnosis will add to
their understanding of the young person, their difficulties or the treatment plan.
Given the concerns about diagnosing young people with borderline personality
disorder, the current approach to diagnosis and conceptualisation of the problems
presented by young people with borderline personality disorder is highly variable.
Consequently, treatment strategies are also inconsistent. While assessing the behaviours that would form a diagnosis of borderline personality disorder, healthcare
professionals often do not conceptualise the problems as borderline personality disorder or make a formal diagnosis. In some circumstances clinicians may use an axis I
diagnosis rather than a diagnosis of borderline personality disorder because of
concerns about the person living with the diagnosis (Chanen et al., 2007a). In addition, because young people with borderline personality disorder often have multiple
346
9.2
DIAGNOSIS
DSM-IV allows for all personality disorders, with the exception of antisocial personality disorder, to be diagnosed in young people with certain caveats (APA, 1994). To
diagnose a personality disorder in a young person the maladaptive personality traits
must be assessed as pervasive and persistent and not limited to periods of an axis I
disorder or to a specific developmental stage (APA, 1994). The criteria for diagnosing borderline personality disorder are the same in young people as for adults. As a
degree of emotional lability, interpersonal instability and identity confusion are more
typical in adolescence, however, assessing clinicians must establish that the severity
and intensity of these behaviours exceed what is typical for young people before
concluding that the criterion is present. Sub-cultural differences in the prevalence of
the behaviours must also be considered. ICD-10 also allows for a diagnosis of
emotionally unstable personality disorder, borderline type, to be made in young
people using the same criteria as for adults (World Health Organization, 1992).
However, it states that, in general for personality disorders, it is unlikely that the
diagnosis of personality disorder will be appropriate before the age of 16 or 17 years.
Defining the beginning and end of the adolescent stage of development varies across
cultures. Using a chronological age to demarcate the stage can present difficulties as
young people of the same chronological age may differ greatly in their levels of
developmental maturity. For this same reason using a specific age as the lower limit
to define when to consider the recommendations in this guideline is problematic. The
GDG and the specialist advisors decided, therefore, that rather than using age as a
criterion, the recommendations in this chapter would apply to young people postpuberty and that it would be highly unusual to consider the diagnosis in young people
under the age of 13.
Both the research literature and clinicians use a variety of terms to refer to young
people who present with behaviours consistent with a diagnosis of borderline personality disorder. Often, when referring to young people a qualifying term is added to the
borderline personality disorder diagnosis. The most commonly used qualifiers
include possible, putative, tentative, emerging and emergent. The guideline
does not use any of these qualifying terms but rather refers to those aged under 18
years who meet criteria for the disorder as young people with borderline personality
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9.3
9.3.1
Introduction
One concern over the appropriateness of the diagnosis of borderline personality disorder in young people is its stability, particularly at a time of major developmental
change during which some of the features that constitute the disorder are present,
albeit at lower levels of intensity. The issue of stability of the diagnosis is important
because it has an impact on the identification, diagnosis and treatment of borderline
personality disorder in young people.
9.3.2
The most appropriate research design to establish whether the borderline personality
disorder diagnosis is stable in young people is the prospective cohort study. The
evidence base reviewed, therefore, comprised all available prospective studies undertaken in young people in whom a diagnosis of borderline personality disorder had
been made either at baseline or at follow-up. Review studies focusing on borderline
personality disorder in young people were also sought to ascertain the state of the
available literature and to check that the relevant references had been identified by the
search strings used.
The summary study characteristics and descriptions of the studies are given in
Table 121, but more information is available in Appendix 16. Reviewed studies are
referred to by first author surname in capitals plus year of publication.
9.3.3
The electronic databases searched are given in Table 120. Details of the search strings
used are in Appendix 7.
Studies of young people diagnosed with borderline personality either at baseline
or at follow-up were included. Forty-four prospective cohort papers were found from
searches of electronic databases, of which 33 were excluded. The most common
reasons for exclusion were that there were no useable data, no longitudinal data were
349
Date searched
Update searches
May 2008
Study design
Population
reported or there were no data reported for borderline personality disorder specifically (further information about both included and excluded studies can be found in
Appendix 16).
Eighteen of the 44 prospective studies found from the searches reported data from
the Children in the Community Study (see for example Cohen et al., 2005). This
study followed-up a randomly selected sample of 976 children recruited in 1975.
Despite the fact that this is a prospective study with a large sample size, a considerable limitation of the dataset is that the study began before the diagnosis of borderline personality disorder in DSM-III. Therefore, the study authors retrospectively
applied a diagnostic instrument to identify borderline personality disorder using an
algorithm for scoring items from self-report questionnaires and structured interviews
conducted by trained lay interviewers. This study has therefore been excluded from
the analysis below.
In addition, a number of studies were found that reported data for cluster B
personality disorders but did not report any data specifically for borderline personality disorder. These studies were also excluded from the analysis because it cannot be
assumed that the stability of different cluster B personality disorders is similar. This
is illustrated by Chanen and colleagues (2004) who report that the stability of different cluster B personality disorders ranges from 0% for histrionic and narcissistic to
100% for antisocial in a sample of young people over a 2-year period.
9.3.4
Study descriptions
CHANEN2004
This is a 2-year prospective study of 101 young people drawn from an adolescent
outpatient service in Australia. Participants were assessed using the SCID-II at baseline
350
351
3 prospective longitudinal
studies (158)
(1) CHANEN2004
(2) GARNET1994
(3) MEIJER1998
(1) 101/63
(2) 21/52
(3) 36/50
(1)(2) 2 years
(3) 3 years
Study IDs
N/% female
Setting
Length of follow-up
(1) 28 years
(2) 1020 years
(3) 57 years
(1) 132/53
(2) 19/26
(3) 59/19
(1) HELGELAND2004
(2) LOFGREN1991
(3) ZELKOWITZ2007
Quasi-prospective studies of
developmental antecedents of
borderline personality disorder
(1) 14 years
(2) 28 years
(3) 9 years
(4) 16 years
(5) 14 years
(1) 412
(2) 1218 (15)
(3) 77 (7)
(4) 1017 (14)
(5) 1216 (14)
(1) 239/10
(2) 130/53
(3) 112/37
(4) 158/60
(5) 145/44
(1) FISCHER2002
(2) HELGELAND2005
(3) HELLGREN1994
(4) RAMKLINT2003
(5) REY1995
Table 121: Summary study characteristics of included studies of the stability of borderline personality disorder in young people
Study descriptions
HELGELAND2004
This is a Norwegian quasi-prospective study investigating the developmental
antecedents of borderline personality disorder in 25 participants with borderline
personality disorder compared with 107 controls. Baseline diagnosis was determined
on the basis of medical records and follow-up interview after 28 years. At follow-up,
SCID-I and SIDP-IV were administered by raters who were blind to the baseline
diagnosis. Twenty-five participants met the criteria for borderline personality disorder
at some point in their life; of these 16 met at least five of the borderline personality
disorder criteria at follow-up, while nine with a history of lifetime borderline personality disorder no longer met at least five of the criteria. Overall 64% of people with a
history of borderline personality disorder met the diagnostic criteria at follow-up.
LOFGREN1991
This US study followed up 19 children who had been diagnosed with borderline
personality disorder in the preceding 10 to 20 years. These children had been identified with borderline personality disorder at baseline according to the criteria of
Bemporad and colleagues (1982, 1987). At follow-up participants were assessed
using the SCID and unstructured clinical interviews. Three of the 19 participants met
the diagnostic criteria for borderline personality disorder at follow-up. A further 13
met the criteria for a personality disorder other than borderline. Overall the proportion of enduring cases was 16% in this sample.
ZELKOWITZ2007
This Canadian study followed up 59 young people who had been treated in a child
psychiatric day hospital 5 to 7 years earlier. The child version of the Retrospective
Diagnostic Interview for Borderlines was used to review participants medical charts;
on this basis 28 participants were diagnosed with borderline pathology of childhood
while 31 participants who did not have a history of borderline pathology of childhood
served as the comparison group. Borderline personality disorder was assessed at
follow-up with the Diagnostic Interview for Borderlines. At follow-up, five participants met the criteria for a current diagnosis of borderline personality disorder and 23
participants who had a history of borderline pathology of childhood did not. Overall
18% of people who were diagnosed with borderline pathology of childhood met the
diagnostic criteria for borderline personality disorder at follow up.
Clinical summary
These quasi-prospective studies of the antecedents of borderline personality disorder in
children and young people suggest that the stability of the diagnosis over a longer
period of time is less clear; the proportion of participants who retained the diagnosis for
borderline personality disorder at follow-up varied from between 16 and 64%.
353
Study descriptions
FISCHER2002
This US study followed up 147 participants diagnosed as hyperactive in childhood
and 73 matched community controls. Participants were originally assessed at age 4 to
12 years; this study followed them up an average of 14 years later. At follow-up,
SCID-NP (non-patient edition), including SCID-II, was administered. Two out of 73
(3%) of participants in the control group, and 20 out of 147 (14%) of those in the
hyperactive group, were diagnosed with borderline personality disorder. Borderline
personality disorder was one of the most common diagnoses in the hyperactive group.
Data are also presented for comorbidities in the hyperactive group: having major
depressive disorder, passive-aggressive personality disorder or histrionic personality
disorder significantly increased the likelihood of having borderline personality
disorder. Likewise, having borderline personality disorder was a significant risk for
major depressive disorder, passive-aggressive personality disorder, histrionic
personality disorder and antisocial personality disorder. In addition, severity of
conduct disorder at adolescent follow-up significantly predicted risk for borderline
personality disorder.
HELGELAND2005
This Norwegian quasi-prospective study assessed personality disorders in adulthood
in a group of participants who were admitted to an adolescent unit 28 years earlier
with emotional and/or disruptive behaviour disorders. One hundred and thirty participants were re-diagnosed based on hospital records and were interviewed with the
SIDP-IV at 28 years, follow-up by a rater who was blind to the baseline diagnosis.
Young people with disruptive behaviour disorders were significantly more likely to
have borderline personality disorder in adulthood than those with emotional disorders: at follow-up, two out of 45 (4%) participants with emotional disorder in adolescence, and 22 out of 85 (26%) participants with disruptive disorder in adolescence,
were diagnosed with borderline personality disorder.
HELLGREN1994
This Swedish study followed-up 56 children at age 16 years who had deficits in attention, motor control and perception at age 7 years and compared them with 45 control
children. The Personality Disorder Examination was administered at follow-up.
Psychiatric disorders and personality disorders were more common in participants
who had deficits in attention, motor control and perception as children compared with
the controls. Three out of 13 (23%) participants who had severe deficits in attention,
motor control and perception as children, and 5 out of 26 (19%) participants who had
mild deficits in attention, motor control and perception as children, were diagnosed
with borderline personality disorder at follow-up. Two out of 11 (18%) participants
who had motor control/perception dysfunction only and three out of six (50%) who
354
Table 122 summarises the stability statistics for each of the studies described above.
Limited evidence makes it difficult to draw any firm conclusions regarding the stability of the diagnosis of borderline personality disorder in young people. There is some
evidence that the diagnosis is stable in between 21 and 40% of young people over a
2- to 3-year period; the picture becomes less clear, however, over longer follow-up
periods, partly due to the fact that the diagnosis of borderline personality disorder was
only introduced in 1980 with DSM-III. A follow-up time of 2 to 3 years is insufficient
to establish stability or instability.
This limited evidence on the stability of the borderline personality disorder
diagnosis in young people has led some commentators to argue for its instability
355
21
36
GARNET1994 21
MEIJER1998
14
21
11
12
N borderline
personality
disorder at
follow-up
(T2)
12
14
N borderline
personality
disorder
present T1,
absent T2
N borderline
personality
disorder
absent T1,
present T2
(new cases)
132
19
59
HELGELAND2004
LOFGREN1991
ZELKOWITZ2007
19
132
N baseline N follow-up
Study ID
57
1020
28
Length of
follow-up(years)
16
N borderline
personality disorder
at follow-up
23
16
N borderline
personality disorder
in past but not at
follow-up
Quasi-prospective studies of developmental antecedents of borderline personality disorder using medical records
36
97
CHANEN2004 101
Study ID
18
16
64
% people with
borderline personality
disorder in past
diagnosed with the
disorder at follow-up
21
33
40
N borderline
% enduring
personality
cases
disorder
present T1 & T2
(enduring cases)
Table 122: Summary stability data for borderline personality disorder in young people
Prospective longitudinal short (2-3 years) follow-up studies of borderline personality disorder in adolescence
356
130
101
HELGELAND2005 130
112
158
145
HELLGREN1994
RAMKLINT2003
REY1995
14
16
28
80
75
56
85
147
Disruptive
disorder in
adolescence
total N
*Odds ratios adjusted for age, sex and presence of other childhood disorders.
145
158
220
239
FISCHER2002
14
Study ID
45
Emotional
disorder in
adolescence
total N
65
OR 0.99* 28
13
22
20
Disruptive
disorder in
adolescence
with
borderline
personality
disorder at
follow-up
357
13
24
20
Total N with
disorder in
adolescence
and
borderline
personality
disorder at
follow-up
11
OR 2.91* 50
Emotional
disorder in
adolescence
with
borderline
personality
disorder at
follow-up
34
23
19
14
% of those
with
disorder in
adolescence
that have
disorder at
follow-up
9.4
9.4.1
A separate review of factors associated with suicide in young people with symptoms
of borderline personality disorder or borderline personality disorder was undertaken.
Personality disorder in this age group may not be stable, therefore different factors are
likely to be important compared with risk factors in adults.
Nine studies of suicide in young people with borderline personality disorder were
found. Two of these were excluded (see below). See Table 123 for a summary of the
characteristics of the included studies.
Studies that did not look at specific risk factors were excluded (CRUMLEY1981;
FRIEDMAN1989).
9.4.2
Study descriptions
BRENT1993
This US study compared 37 psychiatric inpatients aged between 13 and 19 years
who had made a suicide attempt in the year prior to admission with 29 inpatients
who had never made a suicide attempt. The sample was not consecutive but was
frequency matched (the term is not explained by the authors) with a previously
gathered sample of young people who had completed suicide on age, gender and
primary psychiatric diagnosis. Despite this, the never-attempted group contained
358
Studies comparing
those with major
depressive disorder
with those with
borderline personality
disorder
2 observational studies
(125)
Study IDs
(1) BRENT1993
(2) RUNESON1991
(3) STONE1992
(4) YOUNG1995
(1) HORESH2003A
(2) HORESH2003B
N/% female
(1) 66/39
(2) 58/28
(3) 9/56
(4) 55/53
(1) 60/55
(2) 65/77
(1) *(17)
(2) 1318 (15)
Continued
359
Studies comparing
those with major
depressive disorder
with those with
borderline personality
disorder
(1) Inpatients
(1) Outpatients
(2) 79% had previous psychiatric (2) Inpatients
care in 2 years before suicide
(3)(4) Inpatients
Suicidality
*Not
more boys than the group of young people who had attempted suicide (90% and
38% respectively), which also comprised more young people with affective illness.
The study compared the two groups on various factors. As well as finding that
those who had attempted suicide were more likely to be girls and to have an affective illness (notably major depressive disorder, bipolar disorder mixed state and
bipolar spectrum disorder), the study found that this group was less likely to have
diagnoses of conduct disorder or ADHD. They were more likely to have a personality disorder (81.1% versus 58.6%), particularly cluster C disorders (70.3%
versus 48.3%). There were more patients with borderline personality disorder or
borderline traits (32.4%, 10.3%), and this group were more likely to have made a
previous attempt.
RUNESON1991
This study reports on 58 consecutive suicides among young people and young adults
(aged 15 to 29 years) completed between 1984 and 1987 in Sweden. Data were
collected in semi-structured interviews with relatives. In some cases relevant
healthcare professionals were also interviewed. In 69% of cases psychiatric records
360
361
9.4.3
Study descriptions
HORESH2003A
This study looked at suicidality in 40 young people referred to an outpatient clinic
following a suicide attempt. It was undertaken in Israel and compared those with major
depressive disorder (n 20) with those with borderline personality disorder (n 20).
These groups were further compared with a control group (n 20) who had no
psychiatric diagnosis or suicide attempts and who were matched on age and sex. Those
with comorbid borderline personality disorder and major depressive disorder were
excluded. Participants were interviewed within a month of the index admission.
The study found that young people with depression had statistically significantly
higher BDI depression scores than those with borderline personality disorder, who in
turn had statistically significantly higher scores than those in the control group. On a
suicide risk scale, both the major depression and borderline personality disorder
groups had significantly higher scores than the control group. This pattern was the
same for the number of serious life events. Those with borderline personality disorder had experienced significantly more sexual abuse events than either of the other
groups: 30% compared with 5% of those with major depressive disorder and 5% of
the control group.
HORESH2003B
This study, also conducted in Israel, looked at 65 young people with either major
depressive disorder (n 32) or borderline personality disorder (n 33). Some of the
young people in each group had made a recent (that is, within 30 days of assessment)
suicide attempt (n 17), and some had never attempted suicide (n 16). Comorbid
disorders among those with borderline personality disorder included major depressive
disorder (n 10), dysthymia (n 11) and conduct disorder (n 3).
The study found that among those with a diagnosis of borderline personality
disorder, those with a recent suicide attempt were more impulsive, while those with
major depressive disorder with a recent suicide attempt had higher intent scores than
those with a recent suicide attempt and borderline personality disorder.
362
9.4.4
There are relatively few studies of risk factors for suicide in young people with
borderline personality disorder or traits. Young people with borderline personality
disorder who attempt suicide are likely to have some depression symptoms and to be
more impulsive. Young people with borderline personality disorder completing
suicide are more likely to have experienced traumatic events and parental brutality,
absence or divorce. These findings indicate that, as with adults, assessment and
management of suicide risk is likely to form part of the treatment plan.
9.5
ASSESSMENT
9.5.1
9.5.2
There are a number of clinical features that may indicate to the clinician the need to
assess for borderline personality disorder as part of a comprehensive clinical assessment. These are:
frequent suicidal/self-harming behaviours
marked emotional instability
increasing intensity of symptoms
363
multiple comorbidities
non-response to established treatments for current symptoms
high level of functional impairment (Chanen et al., 2007a).
Questionnaire measures may also provide a useful screen to indicate that a
comprehensive assessment is required. Chanen and colleagues (2008b) evaluated four
screening measures for borderline personality disorder in an outpatient sample of
young people: the McLean Screening Instrument for borderline personality disorder
(MSI-borderline personality disorder); the Borderline Personality Questionnaire
(BPQ); items from the IPDE; and the borderline personality disorder items from the
SCID-II. All four measures performed well. The BPQ had the highest diagnostic
accuracy and highest test re-test reliability; it is also the longest of the four measures although administering and scoring can be completed within 15 minutes.
The criteria for diagnosing borderline personality disorder are the same in
young people as for adults (with the caveats as indicated above in section 9.2).
Diagnosing borderline personality disorder in young people can be assisted by a
structured clinical interview and should be conducted as part of a comprehensive
clinical assessment leading to a clear formulation of the young persons difficulties.
The diagnosis of borderline personality disorder in a young person should only be
made after a comprehensive and rigorous assessment has been completed by a practitioner knowledgeable about the adolescent period and skilled in the assessment of
mental health problems in this age group. Such an assessment should also include
a developmental family history with the young persons family or carers. Detailed
and comprehensive assessments are important in all areas of mental health but are
especially so when the diagnosis carries a significant likelihood of stigmatisation.
To assist with the assessment, clinicians may use the questions from the SCID-II or
the Shedler & Westen Assessment Procedure - Adolescents, which is a Q-sort technique based on a structured diagnostic interview that was specifically developed for
the assessment of personality disorder in young people (Westen & Shedler, 2007).
This latter assessment may be suitable in some specialist services but is likely to be
too time consuming for most settings. None of these measures is suitable for use by
tier 1 staff because such measures need to be part of a comprehensive diagnostic
and clinical assessment.
Both the diagnostic criteria and retrospective studies indicate that borderline personality disorder develops in late adolescence/young adulthood, yet the diagnosis is made
rarely at first presentation. Non-diagnosis early in the course of the disorder may relate
to valid concerns about the appropriateness of diagnosing it during this developmental
stage, concerns about misdiagnosis, the iatrogenic effects of diagnosis and/or to a failure to conceptualise the problems as belonging to a personality disorder. Given that a
diagnosis of borderline personality disorder in adolescence predicts both axis I and axis
II problems in adulthood (Cohen et al., 2007; Daley et al., 1999; Johnson et al., 1999b),
failure to consider it early may mean that appropriate early interventions to ameliorate
the difficulties for this group of young people are not offered. This may become increasingly important as more efficacious treatments for borderline personality disorder are
developed.
364
TREATMENT
9.6.1
In relation to treatment for young people, the GDG asked the following clinical question:
What interventions and care processes are effective in improving outcomes or
altering the developmental course for people under the age of 18 with borderline
personality disorder or borderline symptoms?
In order to address this question, the reviews of the literature of adults with
borderline personality disorder were scanned to ascertain whether any studies had
been conducted in young people. This yielded one study of CAT (CHANEN2008),
but there was no effect for CAT compared with manualised good practice other than
for reducing self-harm and general functioning (see Chapter 5 for the data for this
study). No study of a pharmacological intervention was found in young people aged
under 18 years. This is not surprising because not only does no drug have marketing
authorisation for the treatment of people with borderline personality disorder, but also
few psychotropic drugs have marketing authorisation for young people aged under 18
for any indication.
In the absence of high-quality evidence, the GDG and its special advisors (see
Appendix 3) agreed that both the general principles and the recommendations for treatment for adults described elsewhere in this guideline could be applied to young people.
9.6.2
It is desirable to gain informed consent from both the young person and their parents
before treatment starts, not least because the success of any treatment approach
significantly depends upon the development of a positive therapeutic alliance between
the young person, the family and the professionals. In most outpatient settings
consent is usually straightforward as the young person will generally have a choice to
accept or decline treatment. Nonetheless, information about the potential risks and
benefits of the intervention being offered should be given.
There may be times when professionals consider inpatient admission to be necessary, but either the young person or the family do not consent. In the Mental Health
Act 2007 (HMSO, 2007), there have been some changes to the law regarding young
people aged under 18 years. If a young person aged 16 or 17 years has capacity to
give or refuse treatment, it is no longer possible for the person with parental authority to overrule the young persons wishes. However, for those aged under 16 years, a
Gillick-competent young person can still be admitted against his or her wishes with
the consent of someone with parental authority. While the use of parental consent is
legal, it is generally good practice to consider the use of other appropriate legislation,
usually the Mental Health Act, for prolonged periods of admission as it includes safeguards such as the involvement of other professionals, a time limit and a straightforward procedure for appeals and regular reviews.
365
9.6.3
The role of the family in the treatment of young people with borderline personality
disorder is critical to consider. Issues within the family, both past and present, are
likely to be highly relevant to the development or maintenance (or both) of the young
persons problems. Where modification of problematic family interactions is possible,
it is likely to have a significant positive effect on outcome. It may also be the first
opportunity some parents have had to consider and address some of their own particular problems. Severity of parental mental health problems also can impact adversely
on treatment outcome. Where there are extreme family problems, however, working
collaboratively with the family of the young person may prove impossible. Likewise,
it may be difficult to form a meaningful therapeutic alliance with parents whose
parenting style provokes child protection concerns.
9.7
SERVICE CONFIGURATION
9.7.1
Configuration of CAMHS
Interventions for young people with borderline personality disorder will usually be
provided by specialist CAMHS, but some young people are helped significantly by
non-specialist healthcare, social or educational services. In order to recognise the
different levels of interventions for many mental health problems in children and
young people, CAMHS has been organised into four main levels, or tiers, of delivery (NHS Health Advisory Service, 1995; Department of Health, 2004) (see Text
box 5).
9.8
Available evidence for a care pathway for young people with borderline personality
disorder was minimal. The care pathway in this guideline was drawn up in consultation with experts and from extrapolation from the adult care pathway.
366
Tier 2
Tier 3
367
Tier 4
9.8.1
As with adults, both the type of interventions offered to the young person with borderline personality disorder and the manner of delivery are equally important. The
general principles outlined for adults that aim to promote a constructive therapeutic
relationship are also applicable, with some caveats, to young people. There are some
additional principles for working with young people with borderline personality
disorder that are also important and are outlined below.
Active participation
Young people with borderline personality disorder find coping with the developmental challenges of adolescence difficult and consequently struggle to function effectively at home, at school and with their peer group. Frequently, their experiences in
childhood, as well as causing distress and difficulty, have also failed to prepare them
for adolescence. Given these difficulties and the age of the young person, service
providers frequently attempt to take responsibility for the young person or strongly
encourage parents or carers to do so. This presents particular challenges as the developmental task for young people is to separate and individuate from parents/carers and
to develop a degree of autonomy. Young people with borderline personality disorder
often attempt to become autonomous in the absence of key capacities to exercise
autonomy safely, which increases anxiety in families/carers and professionals alike.
Encouraging active participation in this context presents challenges but is highly
important. Promoting active engagement in decision making (for example, outlining
treatment options, highlighting the consequences of certain behaviours or choices and
evaluating the benefits and disadvantages of behaviour change) may assist in developing and maintaining the therapeutic alliance.
368
9.8.2
Tier 1
Professionals in tier 1 are most likely to encounter young people with borderline
personality disorder as a consequence of interpersonal difficulties (for example,
bullying at school), as a result of self-harm, or in association with family difficulties.
371
9.8.3
The transition to adult services for young people is often marked by a series of
discontinuities in terms of personnel, frequency of treatment (often less intense in
adult services) and treatment approach, and often a failure to recognise and adapt
375
9.9
Young people present to services with patterns of behaviour and functioning consistent with a diagnosis of borderline personality disorder. Both DSM-IV and ICD-10
allow clinicians to diagnose borderline personality disorder in young people with
certain caveats. There is very little evidence of the effectiveness of treatments for
young people with borderline personality disorder (with the exception of the study by
CHANEN2008), which is not surprising given the relatively small evidence base in
adults.
Given the limited evidence base, however, there is no reason why the recommendations developed for adults should not be adopted for the treatment and management
of young people with borderline personality disorder, with additional recommendations relating to issues specific to young people, such as the structure of services and
the presence of parents or other carers. Clearly further research into the treatment of
borderline personality disorder in young people is required.
376
Clinical practice recommendations for young people also appear elsewhere in the
guideline where they apply to other evidence review chapters.
9.10.1.1 Young people with a diagnosis of borderline personality disorder, or symptoms and behaviour that suggest it, should have access to the full range of
treatments and services recommended in this guideline, but within CAMHS.
9.10.1.2 CAMHS professionals working with young people with borderline personality disorder should:
balance the developing autonomy and capacity of the young person
with the responsibilities of parents or carers
be familiar with the legal framework that applies to young people,
including the Mental Capacity Act, the Children Acts and the Mental
Health Act.
9.10.1.3 CAMHS and adult healthcare professionals should work collaboratively to
minimise any potential negative effect of transferring young people from
CAMHS to adult services. They should:
time the transfer to suit the young person, even if it takes place after
they have reached the age of 18 years
continue treatment in CAMHS beyond 18 years if there is a realistic
possibility that this may avoid the need for referral to adult mental
health services.
9.10.1.4 NHS trusts providing CAMHS should ensure that young people with
severe borderline personality disorder have access to tier 4 specialist services if required, which may include:
inpatient treatment tailored to the needs of young people with borderline personality disorder
specialist outpatient programmes
home treatment teams.
377
Summary of recommendations
10.
SUMMARY OF RECOMMENDATIONS
GUIDANCE
10.1
10.1.1
Access to services
10.1.1.1
10.1.1.2
10.1.1.3
10.1.1.4
10.1.2
10.1.2.1
When a person with a mild learning disability presents with symptoms and
behaviour that suggest borderline personality disorder, assessment and
diagnosis should take place in consultation with a specialist in learning
disabilities services.
When a person with a mild learning disability has a diagnosis of borderline
personality disorder, they should have access to the same services as other
people with borderline personality disorder.
When care planning for people with a mild learning disability and borderline personality disorder, follow the Care Programme Approach (CPA).
Consider consulting a specialist in learning disabilities services when developing care plans and strategies for managing behaviour that challenges.
People with a moderate or severe learning disability should not normally
be diagnosed with borderline personality disorder. If they show behaviour
and symptoms that suggest borderline personality disorder, refer for
assessment and treatment by a specialist in learning disabilities services.
10.1.2.2
10.1.2.3
10.1.2.4
378
Summary of recommendations
10.1.3
10.1.3.1
10.1.4
10.1.4.1
10.1.5
10.1.5.1
Ask directly whether the person with borderline personality disorder wants
their family or carers to be involved in their care, and, subject to the
persons consent and rights to confidentiality:
encourage family or carers to be involved
ensure that the involvement of families or carers does not lead to withdrawal of, or lack of access to, services
inform families or carers about local support groups for families or
carers, if these exist.
CAMHS professionals working with young people with borderline personality disorder should:
balance the developing autonomy and capacity of the young person
with the responsibilities of parents or carers
be familiar with the legal framework that applies to young people,
including the Mental Capacity Act, the Children Acts and the Mental
Health Act.
10.1.5.2
10.1.6
10.1.6.1
Summary of recommendations
explain the diagnosis and the use and meaning of the term borderline
personality disorder
offer post-assessment support, particularly if sensitive issues, such as
childhood trauma, have been discussed.
10.1.7
10.1.7.1
Anticipate that withdrawal and ending of treatments or services, and transition from one service to another, may evoke strong emotions and reactions in people with borderline personality disorder. Ensure that:
such changes are discussed carefully beforehand with the person (and
their family or carers if appropriate) and are structured and phased
the care plan supports effective collaboration with other care providers
during endings and transitions, and includes the opportunity to access
services in times of crisis
when referring a person for assessment in other services (including for
psychological treatment), they are supported during the referral period
and arrangements for support are agreed beforehand with them.
CAMHS and adult healthcare professionals should work collaboratively to
minimise any potential negative effect of transferring young people from
CAMHS to adult services. They should:
time the transfer to suit the young person, even if it takes place after
they have reached the age of 18 years
continue treatment in CAMHS beyond 18 years if there is a realistic
possibility that this may avoid the need for referral to adult mental
health services.
10.1.7.2
10.1.8
10.1.8.1
10.1.9
10.1.9.1
380
Summary of recommendations
10.1.9.2
Mental health professionals working with people with borderline personality disorder should have routine access to supervision and staff support.
10.2
10.2.1
10.2.1.1
10.2.2
10.2.2.1
10.2.3
10.2.3.1
Consider referring a person with diagnosed or suspected borderline personality disorder who is in crisis to a community mental health service when:
their levels of distress and/or the risk to self or others are increasing
their levels of distress and/or the risk to self or others have not subsided
despite attempts to reduce anxiety and improve coping skills
they request further help from specialist services.
10.3
10.3.1
Assessment
10.3.1.1
Summary of recommendations
10.3.1.2
should be responsible for the routine assessment, treatment and management of people with borderline personality disorder.
When assessing a person with possible borderline personality disorder in
community mental health services, fully assess:
psychosocial and occupational functioning, coping strategies,
strengths and vulnerabilities
comorbid mental disorders and social problems
the need for psychological treatment, social care and support, and
occupational rehabilitation or development
the needs of any dependent children.16
10.3.2
Care planning
10.3.2.1
10.3.2.2
16See
the May 2008 Social Care Institute for Excellence research briefing Experiences of children and
young people caring for a parent with a mental health problem. Available from www.scie.org.uk/
publications/briefings/files/briefing24.pdf
382
Summary of recommendations
10.3.3
10.3.3.1
10.3.3.2
10.3.3.3
10.3.3.4
10.3.4
Psychological treatment
10.3.4.1
10.3.4.2
383
Summary of recommendations
10.3.4.3
10.3.4.4
10.3.4.5
10.3.4.6
10.3.4.7
10.3.5
10.3.5.1
10.3.5.2
10.3.5.3
10.3.5.4
17Sedative
antihistamines are not licensed for this indication and informed consent should be obtained and
documented.
384
Summary of recommendations
10.3.5.5
10.3.5.6
When considering drug treatment for any reason for a person with borderline
personality disorder, provide the person with written material about the drug
being considered. This should include evidence for the drugs effectiveness
in the treatment of borderline personality disorder and for any comorbid
condition, and potential harm. For people who have reading difficulties,
alternative means of presenting the information should be considered, such
as video or DVD. So that the person can make an informed choice, there
should be an opportunity for the person to discuss the material.
Review the treatment of people with borderline personality disorder who
do not have a diagnosed comorbid mental or physical illness and who are
currently being prescribed drugs, with the aim of reducing and stopping
unnecessary drug treatment.
10.3.6
10.3.6.1
Before starting treatment for a comorbid condition in people with borderline personality disorder, review:
the diagnosis of borderline personality disorder and that of the comorbid condition, especially if either diagnosis has been made during a
crisis or emergency presentation
the effectiveness and tolerability of previous and current treatments;
discontinue ineffective treatments.
Treat comorbid depression, post-traumatic stress disorder or anxiety within
a well-structured treatment programme for borderline personality disorder.
Refer people with borderline personality disorder who also have major
psychosis, dependence on alcohol or Class A drugs, or a severe eating
disorder to an appropriate service. The care coordinator should keep in
contact with people being treated for the comorbid condition so that they
can continue with treatment for borderline personality disorder when
appropriate.
When treating a comorbid condition in people with borderline personality
disorder, follow the NICE clinical guideline for the comorbid condition.
10.3.6.2
10.3.6.3
10.3.6.4
10.3.7
Summary of recommendations
18Sedative
antihistamines are not licensed for this indication and informed consent should be obtained and
documented.
386
Summary of recommendations
Follow-up after a crisis
10.3.7.4 After a crisis has resolved or subsided, ensure that crisis plans, and if
necessary the overall care plan, are updated as soon as possible to reflect
current concerns and identify which treatment strategies have proved helpful. This should be done in conjunction with the person with borderline
personality disorder and their family or carers if possible, and should
include:
a review of the crisis and its antecedents, taking into account environmental, personal and relationship factors
a review of drug treatment, including benefits, side effects, any safety
concerns and role in the overall treatment strategy
a plan to stop drug treatment begun during a crisis, usually within 1
week
a review of psychological treatments, including their role in the
overall treatment strategy and their possible role in precipitating the
crisis.
10.3.7.5 If drug treatment started during a crisis cannot be stopped within 1 week,
there should be a regular review of the drug to monitor effectiveness, side
effects, misuse and dependency. The frequency of the review should be
agreed with the person and recorded in the overall care plan.
10.3.8
10.3.8.1
10.3.8.2
Provide people with borderline personality disorder who have sleep problems with general advice about sleep hygiene, including having a bedtime
routine, avoiding caffeine, reducing activities likely to defer sleep (such as
watching violent or exciting television programmes or films), and employing activities that may encourage sleep.
For the further short-term management of insomnia follow the recommendations in Guidance on the use of zaleplon, zolpidem and zopiclone for
the short-term management of insomnia (NICE technology appraisal
guidance 77). However, be aware of the potential for misuse of many of
the drugs used for insomnia and consider other drugs such as sedative
antihistamines.
10.3.9
10.3.9.1
Summary of recommendations
10.4
INPATIENT SERVICES
10.4.1.1
10.4.1.2
10.4.1.3
10.4.1.4
10.4.1.5
10.5
10.5.1
10.5.1.1
388
Summary of recommendations
10.5.1.2
10.5.1.3
develop systems of communication and protocols for information sharing among different services, including those in forensic settings, and
collaborate with all relevant agencies within the local community
including health, mental health and social services, the criminal justice
system, CAMHS and relevant voluntary services
be able to provide and/or advise on social and psychological interventions, including access to peer support, and advise on the safe use of
drug treatment in crises and for comorbidities and insomnia
work with CAMHS to develop local protocols to govern arrangements
for the transition of young people from CAMHS to adult services
ensure that clear lines of communication between primary and secondary care are established and maintained
support, lead and participate in the local and national development of
treatments for people with borderline personality disorder, including
multi-centre research
oversee the implementation of this guideline
develop and provide training programmes on the diagnosis and
management of borderline personality disorder and the implementation of this guideline (see 10.5.1.2)
monitor the provision of services for minority ethnic groups to ensure
equality of service delivery.
The size and time commitment of these teams will depend on local circumstances (for example, the size of trust, the population covered and the estimated referral rate for people with borderline personality disorder).
Specialist teams should develop and provide training programmes that
cover the diagnosis and management of borderline personality disorder and
the implementation of this guideline for general mental health, social care,
forensic and primary care providers and other professionals who have
contact with people with borderline personality disorder. The programmes
should also address problems around stigma and discrimination as these
apply to people with borderline personality disorder.
Specialist personality disorder services should involve people with personality disorders and families or carers in planning service developments, and
in developing information about services. With appropriate training and
support, people with personality disorders may also provide services, such
as training for professionals, education for service users and families or
carers, and facilitating peer support groups.
RESEARCH RECOMMENDATIONS
10.6
What are the best outcome measures to assess interventions for people with borderline personality disorder? This question should be addressed in a three-stage
389
Summary of recommendations
process using formal consensus methods involving people from a range of backgrounds, including service users, families or carers, clinicians and academics. The
outcomes chosen should be valid and reliable for this patient group, and should
include measures of quality of life, function and symptoms for both service users
and carers.
The three-stage process should include: (1) identifying aspects of quality of life,
functioning and symptoms that are important for service users and families/carers; (2)
matching these to existing outcome measures and highlighting where measures are
lacking; (3) generating a shortlist of relevant outcome measures to avoid multiple
outcome measures being used in future. Where measures are lacking, further work
should be done to develop appropriate outcomes.
Why this is important
Existing research examining the effects of psychological and pharmacological interventions for people with borderline personality disorder has used a wide range of
outcomes measures. This makes it difficult to synthesise data from different studies
and to compare interventions. Also, outcomes do not always adequately reflect patient
experience. Agreeing outcome measures for future studies of interventions for people
with borderline personality disorder will make it easier to develop evidence-based
treatment guidelines in the future.
10.7
Summary of recommendations
community mental health services would help to establish the effectiveness, costs and
cost effectiveness of these interventions delivered in generalisable settings. The effect
of these interventions among men and young people should also be examined.
10.8
10.9
MOOD STABILISERS
What is the effectiveness and cost effectiveness of mood stabilisers on the symptoms
of borderline personality disorder? This should be answered by a randomised
placebo-controlled trial which should include the medium to long-term impact of
such treatment. The study should be sufficiently powered to investigate both the
effects and side effects of this treatment.
Why this is important
There is little evidence of the effectiveness of pharmacological treatments for people
with personality disorder. However, there have been encouraging findings from smallscale studies of mood stabilisers such as topiramate and lamotrigine, which indicates
the need for further research. Emotional instability is a key feature of borderline
personality disorder and the effect of these treatments on mood and other key features
of this disorder should be studied. The findings of such a study would support the
development of future recommendations on the role of pharmacological interventions
in the treatment of borderline personality disorder.
391
Summary of recommendations
10.10
What is the best care pathway for people with borderline personality disorder?
A mixed-methods cohort study examining the care pathway of a representative
sample of people with borderline personality disorder should be undertaken. Such a
study should include consideration of factors that should guide referral from primary
to secondary care services, and examine the role of inpatient treatment. The study
should examine the effect that people with borderline personality disorder and servicelevel factors have on the transfer between different components of care and include
collection and analysis of both qualitative and quantitative data.
Why this is important
The development of a care pathway for people with borderline personality disorder
would help to ensure that available resources are used effectively and that services are
suited to their needs. Service provision for people with borderline personality disorder varies greatly in different parts of the country, and factors that should be considered when deciding the type and intensity of care that people receive are poorly
understood. A cohort study in which qualitative and quantitative data from service
users and providers are collected at the point of transfer to and from different parts of
the care pathway would help to inform the decisions that people with borderline
personality disorder and healthcare professionals have to make about the type of
services that people receive.
392
Appendices
11.
APPENDICES
392
399
413
414
416
417
419
422
426
440
463
491
493
496
499
on CD
on CD
on CD
393
Appendix 1
APPENDIX 1:
SCOPE FOR THE DEVELOPMENT OF THE
CLINICAL GUIDELINE
Final Version
14 March 2007
GUIDELINE TITLE
Borderline personality disorder: treatment and management
Short title
Borderline personality disorder (BPD)
BACKGROUND
The National Institute for Health and Clinical Excellence (NICE or the Institute)
has commissioned the National Collaborating Centre for Mental Health to develop a
clinical guideline on borderline personality disorder for use in the NHS in England and
Wales. This follows referral of the topic by the Department of Health (see appendix [to
the Scope, p. 400]). The guideline will provide recommendations for good practice that
are based on the best available evidence of clinical and cost effectiveness.
The Institutes clinical guidelines will support the implementation of National
Service Frameworks (NSFs) in those aspects of care where a framework has been
published. The statements in each NSF reflect the evidence that was used at the time the
framework was prepared. The clinical guidelines and technology appraisals published by
the Institute after an NSF has been issued will have the effect of updating the framework.
NICE clinical guidelines support the role of healthcare professionals in providing
care in partnership with patients, taking account of their individual needs and preferences, and ensuring that patients (and their families/carers, where appropriate) can
make informed decisions about their care and treatment.
CLINICAL NEED FOR THE GUIDELINE
Borderline personality disorder is characterised by a pattern of instability of interpersonal relationships, self-image and affects, and by marked impulsivity. Its diagnosis
does not imply any specific cause.
394
Appendix 1
Estimates of the prevalence of borderline personality disorder vary between 0.7
and 2% in the general population. It is estimated to be present in 20% of inpatients in
psychiatric wards and between 10 and 30% of outpatients. It is a disorder predominantly diagnosed in women (75%); although, again, estimates vary and most of these
studies have been in clinical populations, where women predominate as they are more
likely to seek treatment. Other estimates indicate that the rate in men (1%) is two and
a half times that in women (0.4%). The prevalence of borderline personality disorder
is particularly high in the prison population; in England and Wales it is estimated to
be 23% among male remand prisoners, 14% among sentenced male prisoners and
20% among female prisoners.
Borderline personality disorder is defined descriptively in terms of its associated
impairments. ICD-10 uses the term emotionally unstable personality disorder, dividing this into two variants (impulsive type and borderline type) both of which share the
general theme of impulsiveness and lack of self-control. The impulsive variant is
characterised by a tendency to conflict and outbursts of anger or violence, difficulty
in maintaining any course of action that offers no immediate reward, and instability
of mood; the borderline variant is characterised by disturbances of self-image, a
tendency to unstable relationships, efforts to avoid abandonment, and threats or acts
of self-harm (including suicide). In DSM-IV, borderline personality disorder is
defined more broadly to include all of the features of the borderline variant of
emotionally unstable personality disorder and most of the criteria for the impulsive
variant. DSM-IV also defines all personality disorders as axis II disorders. Borderline
personality disorder is defined as a cluster B disorder (dramatic, emotional or erratic
type) along with antisocial, histrionic and narcissistic personality disorders. There is
substantial comorbidity of borderline personality disorder with common mental
disorders such as depressive illness, the range of anxiety disorders or substance
misuse disorders.
There is some divergence between ICD-10 and DSM-IV as to whether borderline/emotionally unstable personality disorder can be diagnosed in those younger than
18 years, and this may lead to uncertainties about the usage of the diagnosis in young
people. In ICD-10 the disorder comes within the overall grouping of disorders of
adult personality and behaviour, but DSM-IV specifies that borderline personality
disorder can be diagnosed in those younger than 18 if the features of the disorder have
been present for at least 1 year.
Specific causes of borderline personality disorder have not been identified.
Although the processes that lead to its development remain a matter of debate, it
appears likely that borderline personality disorder develops through the accumulation
and interaction of multiple factors, including temperament, childhood and adolescent
experiences, and other environmental factors. One common factor in people with
borderline personality disorder is history of traumatic events during childhood and
adolescence, in particular physical, sexual and emotional abuse, neglect, hostile
conflict, and early parental loss or separation. However, the association with childhood and adolescent trauma is neither ubiquitous in borderline personality disorder
nor unique to this personality disorder. Other psychosocial and demographic factors
associated with the disorder may reflect the consequences of the disorder on the
395
Appendix 1
individuals life rather than causal processes. A role for genetic factors mediating the
response to environmental factors and life events has been postulated, but the
evidence is sparse. Neurobiological mechanisms have also been proposed on the basis
of neuroimaging data, but it is unknown whether any biological dysfunction associated with borderline personality disorder is a cause or consequence of the disorder.
Neuropsychological impairments associated with borderline personality disorder
appear to be different from other personality disorders and show specific impairments
of memory and emotional processing.
Borderline personality disorder can be a seriously disabling condition and often
takes a huge toll on the individual. People with borderline personality disorder
usually develop signs and symptoms of the disorder in adolescence or early adulthood. They may experience difficulties such as considerable changes in mood, lack
of confidence, impulsive and self-injurious behaviour, substance use, excessive
sensitivity and fears of rejection and criticism. As a consequence it is hard for
people with borderline personality disorder to develop mature and lasting relationships or to function successfully in the home, educational settings and the workplace. Failures in these areas accentuate feelings of rejection, depressive moods and
self-destructive impulses. As a result of their difficulty in controlling their impulses
and emotions, and also their often distorted perceptions of themselves and others,
people with borderline personality disorder may experience enormous pain and
evoke high levels of anxiety in those around them. Suicide is a particular risk in
borderline personality disorder, with up to one in ten people with borderline personality disorder committing suicide. The impact of the disorder on the individual is
often exacerbated by presence of comorbid conditions such as affective disorders
and substance misuse.
In general, the impact of the disorder and the risk of suicide is greatest in early
adulthood. The short- to medium-term outcome is poor, however longer term
follow-up is more positive. Although most people with borderline personality disorder still have significant morbidity; for example, some long-term studies of borderline personality disorder indicate that only 50% of women and 25% of men
diagnosed with the condition gain stability and satisfactory relationships characterised by intimacy.
People with borderline personality disorder use mental health services at higher
rates than people from other mental health diagnostic groups, except for people with
schizophrenia. They tend to make heavy demands on services, having frequent
contact with mental health and social services, accident and emergency departments,
GPs and the criminal justice system, and are likely to be high-cost, persistent, and
intensive users of mental health services.
It should be noted that a separate guideline on antisocial personality disorder is
being developed in parallel to the development of the borderline personality disorder
guideline. Beyond the differences in the diagnostic criteria for borderline personality
disorder and antisocial personality disorder, there are good grounds for developing
two separate guidelines for these disorders, rather than one unified guideline on
personality disorders, as there are marked differences in the populations the guidelines will address in terms of their interaction with services. People with borderline
396
Appendix 1
personality disorder tend to be treatment seeking and at high risk of self-harm and
suicide, whereas people with antisocial personality disorder tend not to seek treatment, are likely to come into contact with services via the criminal justice system and
their behaviour is more likely to be a risk to others. Nevertheless, it is acknowledged
that people with either of these diagnoses may present with some symptoms and
behaviour normally associated with the other diagnosis.
THE GUIDELINE
The guideline development process is described in detail in two publications that are
available from the NICE website (see Further information). The guideline development process: an overview for stakeholders, the public and the NHS describes how
organisations can become involved in the development of a guideline. The guidelines
manual provides advice on the technical aspects of guideline development.
This document is the scope. It defines exactly what this guideline will (and will
not) examine, and what the guideline developers will consider. The scope is based on
the referral from the Department of Health (see appendix [to the Scope, p. 400]). The
areas that will be addressed by the guideline are described in the following sections.
POPULATION
Groups that will be covered:
adults (aged 18 years and older) with a diagnosis of borderline personality
disorder
people younger than 18 years with borderline symptoms, or putative borderline
personality disorder
people with borderline personality disorder and a learning disability.
HEALTHCARE SETTING
The guideline will cover the care provided within primary, community, secondary and
specialist healthcare services within the NHS. The guideline will include specifically:
care in general practice and NHS community care
hospital outpatient, day and inpatient care, including secure hospitals
primary/secondary interface of care
the transition from child and adolescent services to adult services
care in prisons and the transition from prison health services to NHS services
This is an NHS guideline. It will comment on the interface with other services such
as: prison health services, forensic services, social services and the voluntary sector. It
will not include recommendations relating to the services exclusively provided by
these agencies, except insofar as the care provided in those institutional settings is
provided by NHS healthcare professionals, funded or contracted by the NHS.
397
Appendix 1
CLINICAL MANAGEMENT AREAS THAT WILL BE COVERED
BY THE GUIDELINE
Early identification of borderline personality disorder: clarification and confirmation of diagnostic criteria currently in use, and therefore the diagnostic factors that
trigger the use of this guideline.
Treatment pathways.
The full range of treatment and care normally made available by the NHS, including art and music therapy.
All common psychological interventions currently employed in the NHS, including dynamic psychotherapy and cognitive behavioural treatments.
The appropriate use of pharmacological interventions, including initiation and
duration of treatment, management of side effects and discontinuation. Note
that guideline recommendations will normally fall within licensed indications;
exceptionally, and only where clearly supported by evidence, use outside a
licensed indication may be recommended. The guideline will assume that
prescribers will use a drugs summary of product characteristics to inform their
decisions for individual patients. Nevertheless, where pharmacological interventions are commonly utilised off-licence in treatment strategies for people
with BPD in the NHS, the evidence underpinning their usage will be critically
evaluated.
Combined pharmacological and psychological treatments.
Therapeutic communities.
The therapeutic environment, including team and individual professionals functioning and how they are influenced by working with this client group.
Treatment of people younger than 18 years for borderline symptoms, or putative
borderline personality disorder, in so far as the treatment may alter the level of
impairment, risk or progression to adult borderline personality disorder.
Management of common comorbidities in people with borderline personality
disorder, as far as these conditions affect the treatment of borderline personality
disorder.
Management of borderline personality disorder in individuals who also have a
learning disability.
Sensitivity to different beliefs and attitudes of different races and cultures.
The role of the family/carers in the treatment and support of people with borderline personality disorder (with consideration of choice, consent and help), and
support that may be needed by families/carers themselves.
The guideline development group will take reasonable steps to identify ineffective
interventions and approaches to care. When robust and credible recommendations
for repositioning the intervention for optimal use, or changing the approach to
care to make more efficient use of resources, can be made, they will be clearly
stated. When the resources released are substantial, consideration will be given to
listing such recommendations in the Key priorities for implementation section
of the guideline.
398
Appendix 1
CLINICAL MANAGEMENT AREAS THAT WILL NOT BE
COVERED BY THE GUIDELINE
STATUS
Scope
This is the consultation draft of the scope. The consultation period is 21 November
19 December 2006.
The guideline will cross-refer to relevant clinical guidance19 issued by the
Institute, including:
Schizophrenia: Core interventions in the treatment and management of schizophrenia in primary and secondary care (2002)
Depression: The management of depression in primary and secondary care
(2004)
Anxiety: Management of generalised anxiety disorder and panic disorder (2004)
Self-harm: The short-term physical and psychological management and secondary prevention of self-harm in primary and secondary care (2004)
Post-traumatic stress disorder: Management of PTSD in adults in primary,
secondary and community care (2005)
Obsessive-compulsive disorder: Core interventions in the treatment of obsessivecompulsive disorder and body dysmorphic disorder (2005)
Violence: The short-term management of disturbed/violent behaviour in in-patient
psychiatric settings and emergency departments (2005)
Bipolar disorder: The management of bipolar disorder in adults, children and
adolescents, in primary and secondary care (2006)
Drug misuse: Opioid detoxification (2007)
Drug misuse: Psychosocial interventions (2007)
Attention deficit hyperactivity disorder: Diagnosis and management of ADHD in
children, young people and adults (2008)
Antisocial personality disorder: Treatment, management and prevention (2009).
GUIDELINE
The development of the guideline recommendations will begin in January 2007.
19Since
the Scope was issued some of the guideline titles had changed during development; the titles have
been corrected here to reflect those changes.
399
Appendix 1
FURTHER INFORMATION
Information on the guideline development process is provided in:
An overview for stakeholders, the public and the NHS (2006 edition)
The guidelines manual (2006 edition).
These booklets are available as PDF files from the NICE website
(http://www.nice.org.uk/page.aspx?oguidelinesmanual). Information on the
progress of the guideline will also be available from the website.
400
Appendix 2
APPENDIX 2:
DECLARATIONS OF INTERESTS BY GDG MEMBERS
With a range of practical experience relevant to borderline personality disorder in
the GDG, members were appointed because of their understanding and expertise in
healthcare for people with borderline personality disorder and support for their families/carers, including: scientific issues; health research; the delivery and receipt of
healthcare, along with the work of the healthcare industry; and the role of professional organisations and organisations for people with borderline personality disorder
and their families/carers.
To minimise and manage any potential conflicts of interest, and to avoid any
public concern that commercial or other financial interests have affected the work of
the GDG and influenced guidance, members of the GDG must declare as a matter of
public record any interests held by themselves or their families which fall under specified categories (see below). These categories include any relationships they have
with the healthcare industries, professional organisations and organisations for people
with borderline personality disorder and their families/carers.
Individuals invited to join the GDG were asked to declare their interests before
being appointed. To allow the management of any potential conflicts of interest that
might arise during the development of the guideline, GDG members were also asked
to declare their interests at each GDG meeting throughout the guideline development
process. The interests of all the members of the GDG are listed below, including interests declared prior to appointment and during the guideline development process.
CATEGORIES OF INTEREST
Paid employment
Personal pecuniary interest: Financial payments or other benefits from either
the manufacturer or the owner of the product or service under consideration in this
guideline, or the industry or sector from which the product or service comes. This
includes holding a directorship, or other paid position; carrying out consultancy
or fee paid work; having shareholdings or other beneficial interests; receiving
expenses and hospitality over and above what would be reasonably expected to
attend meetings and conferences.
Personal family interest: Financial payments or other benefits from the healthcare industry that were received by a member of your family.
Non-personal pecuniary interest: Financial payments or other benefits received
by the GDG members organisation or department, but where the GDG member
has not personally received payment, including fellowships and other support
provided by the healthcare industry. This includes a grant or fellowship or other
payment to sponsor a post, or contribute to the running costs of the department;
commissioning of research or other work; contracts with, or grants from, NICE.
401
Appendix 2
Personal non-pecuniary interest: These include, but are not limited to, clear
opinions or public statements you have made about borderline personality disorder, holding office in a professional organisation or advocacy group with a direct
interest in borderline personality disorder, other reputational risks relevant to
borderline personality disorder.
Declarations of interest
Professor Peter Tyrer Chair, Guideline Development Group
Employment
None
None
Non-personal pecuniary
interest
Personal non-pecuniary
interest
None
Continued
402
Appendix 2
Declarations of interest (Continued)
Professor Anthony Bateman
Employment
Personal pecuniary
interest
None
Non-personal pecuniary
interest
Personal non-pecuniary
interest
Appendix 2
Declarations of interest (Continued)
Professor Nick Bouras
Employment
None
None
Non-personal pecuniary
interest
Personal non-pecuniary
interest
None
None
None
Non-personal pecuniary
interest
Personal non-pecuniary
interest
None
Dr Mike Crawford
Employment
None
None
Non-personal pecuniary
interest
None
Personal non-pecuniary
interest
None
Continued
404
Appendix 2
Declarations of interest (Continued)
Ms Victoria Green
Employment
None
None
Non-personal pecuniary
interest
None
Personal non-pecuniary
interest
None
Dr Rex Haigh
Employment
Personal pecuniary
interest
None
Non-personal pecuniary
interest
Personal non-pecuniary
interest
None
Board/executive committee member of several
relevant charitable and not-for-profit organisations:
Trustee Community Housing and Therapy
(registered charity); Trustee Association of
Therapeutic Communities; Association of
Therapeutic Communities (registered charity);
Borderline UK Board (not for profit limited
company); Personality Plus Board (community
interest company); Exclusion Link (community
interest company) all as unpaid voluntary work
Continued
405
Appendix 2
Declarations of interest (Continued)
Mr Dennis Lines
Employment
Semi-retired
None
None
Non-personal pecuniary
interest
None
Personal non-pecuniary
interest
None
Dr David Moore
Employment
Personal pecuniary
interest
None
None
Non-personal pecuniary
interest
None
Personal non-pecuniary
interest
None
Dr Paul Moran
Employment
None
None
Non-personal pecuniary
interest
406
Appendix 2
Declarations of interest (Continued)
20052007 NHS Service Delivery and
Organisation Research and Development
Programme an evaluation of pilot services for
people with personality disorder in adult
forensic settings; 196,440
20052007 Nuffield Foundation The relative
effects of maternal personality disorder and
depression on infant development at 18 months;
110,702
20032005 Foundation for the Study of Infant
Deaths the impact of maternal personality
disorder and depression on early infant care;
93,000
20052007 NHS Service Delivery and
Organisation Research and Development
Programme Learning the lessons: an evaluation of pilot community services for adults with
personality disorder; 286,076
20032004 Department of Health The impact
of personality disorder on the needs and
pathways to psychiatric care of mentally ill
inpatients; 39, 987
20012005 National Programme on Forensic
Mental Health; Department of Health Access
to treatment for people with severe personality
disorder; 186,073
Personal non-pecuniary
interest
None
Personal pecuniary
interest
None
None
Continued
407
Appendix 2
Declarations of interest (Continued)
Non-personal pecuniary
interest
Personal non-pecuniary
interest
Personal pecuniary
interest (non-specific)
408
Appendix 2
Declarations of interest (Continued)
20042005 Bristol-Myers Squibb 1250;
consultancy (psychosis)
20042005 Eli Lilly; 2500 consultancy
(psychosis and depression)
20032004 Eli Lilly; 1500 consultancy
(psychosis)
Personal family interest
None
Non-personal pecuniary
interest
None
Personal non-pecuniary
interest
Dr Mark Sampson
Employment
Personal pecuniary
interest
None
None
Non-personal pecuniary
interest
None
Personal non-pecuniary
interest
Dr Michaela Swales
Employment
None
409
Appendix 2
Declarations of interest (Continued)
Personal family interest
Personal non-pecuniary
interest
410
Appendix 2
Declarations of interest (Continued)
Dr Angela Wolff
Employment
Personal pecuniary
interest
None
None
Non-personal pecuniary
interest
None
Personal non-pecuniary
interest
None
None
None
Non-personal pecuniary
interest
Personal non-pecuniary
interest
411
Appendix 2
National Collaborating Centre for Mental Health (Continued)
implementation tools for the schizophrenia
guideline.
Expressed views on a number of news and
current affairs television and radio programmes
on the following topics: the role of selective
publishing in the pharmaceutical industry;
improving access to psychological therapies; use
of Seroxat in children and adults; use of SSRIs
in adults; use of antipsychotics for the treatment
of dementia; use of cholinesterase inhibitors for
the treatment of dementia
Ms Linda Bayliss (2008)
Employment
None
None
Non-personal pecuniary
interest
None
Personal non-pecuniary
interest
None
Ms Rachel Burbeck
Employment
None
None
Non-personal pecuniary
interest
None
Personal non-pecuniary
interest
None
None
None
Non-personal pecuniary
interest
None
412
Appendix 2
National Collaborating Centre for Mental Health (Continued)
Personal non-pecuniary
interest
None
None
None
Non-personal pecuniary
interest
None
Personal non-pecuniary
interest
None
None
None
Non-personal pecuniary
interest
None
Personal non-pecuniary
interest
None
None
None
Non-personal pecuniary
interest
None
Personal non-pecuniary
interest
None
None
413
Appendix 2
National Collaborating Centre for Mental Health (Continued)
Personal family interest
None
Non-personal pecuniary
interest
None
Personal non-pecuniary
interest
None
Ms Sarah Stockton
Employment
None
None
Non-personal pecuniary
interest
None
Personal non-pecuniary
interest
None
Dr Clare Taylor
Employment
Editor, NCCMH
None
None
Non-personal pecuniary
interest
None
Personal non-pecuniary
interest
None
None
None
Non-personal pecuniary
interest
None
Personal non-pecuniary
interest
None
414
Appendix 3
APPENDIX 3:
SPECIAL ADVISORS TO THE GUIDELINE
DEVELOPMENT GROUP
Dr Andrew Cotgrove
Professor Kate Davidson
Ms Jane Dudley
Professor Edzard Ernst
Professor Roger Mulder
Professor John Oldham
Professor Kenneth Silk
Professor Paul Soloff
Dr Alison Wood
415
Appendix 4
APPENDIX 4:
STAKEHOLDERS AND EXPERTS WHO
SUBMITTED COMMENTS IN RESPONSE TO
THE CONSULTATION DRAFT OF THE GUIDELINE
STAKEHOLDERS
Arts Psychotherapies Services
Association for Cognitive Analytic Therapy (ACAT)
Association for Family Therapy and Systemic Practice
Association of Adult Psychotherapists
Association of Professional Music Therapists
Association of Psychoanalytic Psychotherapy in the NHS
Association of Therapeutic Communities
Barnsley PCT
Berkshire Healthcare NHS Trust
Bournemouth and Poole PCT
Bright
British Association for Psychopharmacology
British Association of Art Therapists
British Association of Drama Therapists
British Psychological Society
Cassel Hospital
College of Occupational Therapists
Department of Health
Derbyshire Mental Health Services NHS Trust
Enfield Borough in Barnet, Enfield, and Haringey Mental Health Trust
Henderson Hospital Services
Hertfordshire Partnership NHS Trust
Leeds PCT
Leicestershire Partnership Trust
Managed Clinical Network for Personality Disorder, Leicestershire Partnership Trust
Mental Health Foundation
Mersey Care NHS Trust
Milton Keynes PCT
Mind
National Coordinating Centre for Health Technology Assessment (NCCHTA)
National Network For Safeguarding Children Leads in Mental Health Trusts in England
NHS Direct
NHS Quality Improvement Scotland
Northumberland Tyne & Wear NHS Trust
416
Appendix 4
Orygen Research Centre
Oxfordshire and Buckinghamshire Mental Health Partnership NHS Trust
Partnerships in Care
Royal College of Nursing
Royal College of Paediatrics and Child Health
Royal College of Psychiatrists
Royal Liverpool Childrens NHS Trust
Sainsbury Centre for Mental Health
Sheffield Health and Social Care Foundation Trust
Somerset Partnership NHS and Social Care Trust
South London and Maudsley NHS Foundation Trust
Sussex Partnership NHS Trust
Tavistock and Portman Foundation Trust
Tees, Esk & Wear Valleys NHS Trust
UK Council for Psychotherapy
UK Psychiatric Pharmacy Group (UKPPG)
University of Liverpool
West London Mental Health NHS Trust
EXPERTS
Dr Andrew Chanen
Dr Jean Cottraux
Dr Jane Garner
Professor Sigmund Karterud
Dr Ian Kerr
Dr Eileen Vizard
417
Appendix 5
APPENDIX 5:
RESEARCHERS CONTACTED TO REQUEST
INFORMATION ABOUT UNPUBLISHED OR
SOON-TO-BE PUBLISHED STUDIES
Dr Allan Abbass
Dr Helen Andrea
Dr Dawn Bales
Dr Nick Bendit
Professor Donald Black
Dr Gregory Carter
Dr Andrew Chanen
Dr Susan Clarke
Dr John Clarkin
Dr Jean Cottraux
Dr Hans Eriksson
Professor Peter Fonagy
Professor Paul Links
Professor Roel Verheul
418
Appendix 6
APPENDIX 6:
CLINICAL QUESTIONS
No. Clinical question/subsidiary questions
1
2a
2b
4a
4b
4c
4d
4e
4f
4g
5
5a
Appendix 6
7a
7b
7c
7d
7e
10
11
11a
12
12a
13
14
15
16
17
420
Appendix 7
APPENDIX 7:
SEARCH STRATEGIES FOR THE
IDENTIFICATION OF CLINICAL STUDIES
421
Appendix 7
13 (#9 OR #10 OR #11 OR #12)
14 (#8 OR #13)
2. Systematic review search filters
a. MEDLINE, EMBASE, PsycINFO, CINAHL Ovid interface
1 cochrane library/or exp literature searching/or exp literature review/or exp
review literature/or systematic review/or meta analysis/or meta-analysis as
topic/
2 ((systematic or quantitative or methodologic$) adj5 (overview$ or
review$)).mp.
3 (metaanaly$ or meta analy$ or metasynthesis or meta synthesis).mp.
4 (research adj (review$ or integration)).mp.
5 reference list$.ab.
6 bibliograph$.ab.
7 published studies.ab.
8 relevant journals.ab.
9 selection criteria.ab.
10 (data adj (extraction or synthesis)).ab.
11 (handsearch$ or ((hand or manual) adj search$)).tw.
12 (mantel haenszel or peto or dersimonian or der simonian).tw.
13 (fixed effect$ or random effect$).tw.
14 ((bids or cochrane or index medicus or isi citation or psyclit or psychlit or
scisearch or science citation or (web adj2 science)) and review$).mp.
15 (systematic$ or meta$).pt. or (literature review or meta analysis or systematic
review).md.
16 (pooled or pooling).tw.
17 or/116
3. RCT search filters
a. MEDLINE, EMBASE, PsycINFO, CINAHL Ovid interface
1
2
3
4
5
6
422
exp clinical trials/or exp clinical trial/or exp controlled clinical trials/
exp crossover procedure/or exp cross over studies/or exp crossover design/
exp double blind procedure/or exp double blind method/or exp double blind
studies/or exp single blind procedure/or exp single blind method/or exp single
blind studies/
exp random allocation/or exp randomization/or exp random assignment/or exp
random sample/or exp random sampling/
exp randomized controlled trials/or exp randomized controlled trial/or
randomized controlled trials as topic/
(clinical adj2 trial$).tw.
Appendix 7
7 (crossover or cross over).tw.
8 (((single$ or doubl$ or trebl$ or tripl$) adj5 (blind$ or mask$ or dummy)) or
(singleblind$ or doubleblind$ or trebleblind$)).tw.
9 (placebo$ or random$).mp.
10 (clinical trial$ or random$).pt. or treatment outcome$.md.
11 animals/not (animals/and human$.mp.)
12 (animal/or animals/) not ((animal/and human/) or (animals/and humans/))
13 (animal not (animal and human)).po.
14 (or/110) not (or/1113)
423
Appendix 8
APPENDIX 8:
CLINICAL STUDY DATA EXTRACTION FORM
Topic Area:
Comparisons:
Total N
Rev Man
Study Dbase
Data Checked
Reference Manager
updated
Excluded (record
reason in Notes
below)
Randomised?
Blind?
Age:
Setting:
Analysis:
Diagnosis
% comorbid
Axis I
% comorbid
Axis II
Mean
baseline
424
Appendix 8
Completed by:
1 TREATMENT GROUP:
N randomised:
Leaving study
Leaving study
early (any reason) early (side effects)
Continous data
Mean
SD
Mean
SD
Mean
SD
Mean
SD
Mean
SD
Mean
SD
Mean
SD
Mean
SD
Mean
SD
Mean
SD
Mean
SD
Mean
SD
Mean
SD
Mean
SD
Mean
SD
Mean
SD
Trial length:
Interventions (dose):
1
2
3
425
Appendix 8
Dichotomous data
2 TREATMENT GROUP:
N randomised:
Leaving study
Leaving study
early (any reason) early (side effects)
426
Appendix 8
Continous data
Mean
SD
Mean
SD
Mean
SD
Mean
SD
Mean
SD
Mean
SD
Mean
SD
Mean
SD
Mean
SD
Mean
SD
Mean
SD
Mean
SD
Mean
SD
Mean
SD
Mean
SD
Mean
SD
Dichotomous data
427
Appendix 9
APPENDIX 9:
QUALITY CHECKLISTS FOR CLINICAL STUDIES
AND REVIEWS
The methodological quality of each study was evaluated using dimensions adapted
from SIGN (SIGN, 2001). SIGN originally adapted its quality criteria from checklists
developed in Australia (Liddel et al., 1996). Both groups reportedly undertook extensive development and validation procedures when creating their quality criteria.
Quality Checklist for a Systematic Review or Meta-Analysis
Study ID:
Guideline topic:
Well covered
Not addressed
Adequately addressed Not reported
Poorly addressed
Not applicable
Well covered
Not addressed
Adequately addressed Not reported
Poorly addressed
Not applicable
Well covered
Not addressed
Adequately addressed Not reported
Poorly addressed
Not applicable
Well covered
Not addressed
Adequately addressed Not reported
Poorly addressed
Not applicable
Appendix 9
Notes on the use of the methodology checklist: systematic reviews and
meta-analyses
Section 1 identifies the study and asks a series of questions aimed at establishing the
internal validity of the study under review that is, making sure that it has been
carried out carefully and that the outcomes are likely to be attributable to the intervention being investigated. Each question covers an aspect of methodology that
research has shown makes a significant difference to the conclusions of a study.
For each question in this section, one of the following should be used to indicate
how well it has been addressed in the review:
well covered
adequately addressed
poorly addressed
not addressed (that is, not mentioned or indicates that this aspect of study design
was ignored)
not reported (that is, mentioned but insufficient detail to allow assessment to be
made)
not applicable.
1.1
Unless a clear and well-defined question is specified in the report of the review, it will
be difficult to assess how well it has met its objectives or how relevant it is to the
question to be answered on the basis of the conclusions.
1.2
One of the key distinctions between a systematic review and a general review is the
systematic methodology used. A systematic review should include a detailed description of the methods used to identify and evaluate individual studies. If this description is not present, it is not possible to make a thorough evaluation of the quality of
the review, and it should be rejected as a source of level-1 evidence (though it may be
useable as level-4 evidence, if no better evidence can be found).
1.3
A systematic review based on a limited literature search for example, one limited to
MEDLINE only is likely to be heavily biased. A well-conducted review should as
a minimum look at EMBASE and MEDLINE and, from the late 1990s onward, the
429
Appendix 9
Cochrane Library. Any indication that hand searching of key journals, or follow-up of
reference lists of included studies, were carried out in addition to electronic database
searches can normally be taken as evidence of a well-conducted review.
1.4
A well-conducted systematic review should have used clear criteria to assess whether
individual studies had been well conducted before deciding whether to include or
exclude them. If there is no indication of such an assessment, the review should be
rejected as a source of level-1 evidence. If details of the assessment are poor, or the
methods are considered to be inadequate, the quality of the review should be downgraded. In either case, it may be worthwhile obtaining and evaluating the individual
studies as part of the review being conducted for this guideline.
1.5
Studies covered by a systematic review should be selected using clear inclusion criteria (see question 1.4 above). These criteria should include, either implicitly or explicitly, the question of whether the selected studies can legitimately be compared. It
should be clearly ascertained, for example, that the populations covered by the studies are comparable, that the methods used in the investigations are the same, that the
outcome measures are comparable and the variability in effect sizes between studies
is not greater than would be expected by chance alone.
Section 2 relates to the overall assessment of the paper. It starts by rating the
methodological quality of the study, based on the responses in Section 1 and using the
following coding system:
430
Appendix 9
Quality checklist for an RCT
Study ID:
Guideline topic:
1.1
Well covered
Not addressed
Adequately addressed Not reported
Poorly addressed
Not applicable
1.2
Well covered
Not addressed
Adequately addressed Not reported
Poorly addressed
Not applicable
1.3
An adequate concealment
method is used.
Well covered
Not addressed
Adequately addressed Not reported
Poorly addressed
Not applicable
1.4
Well covered
Not addressed
Adequately addressed Not reported
Poorly addressed
Not applicable
1.5
1.6
Well covered
Not addressed
Adequately addressed Not reported
Poorly addressed
Not applicable
1.7
Well covered
Not addressed
Adequately addressed Not reported
Poorly addressed
Not applicable
1.8
1.9
431
Appendix 9
1.10 Where the study is carried out at
more than one site, results are
comparable for all sites.
Well covered
Not addressed
Adequately addressed Not reported
Poorly addressed
Not applicable
1.1
Unless a clear and well-defined question is specified, it will be difficult to assess how
well the study has met its objectives or how relevant it is to the question to be
answered on the basis of its conclusions.
1.2
Appendix 9
description of randomisation is poor, or the process used is not truly random (for
example, allocation by date or alternating between one group and another) or can
otherwise be seen as flawed, the study should be given a lower quality rating.
1.3
1.4
Blinding can be carried out up to three levels. In single-blind studies, patients are
unaware of which treatment they are receiving; in double-blind studies, the doctor and
the patient are unaware of which treatment the patient is receiving; in triple-blind
studies, patients, healthcare providers and those conducting the analysis are unaware
of which patients receive which treatment. The higher the level of blinding, the lower
the risk of bias in the study.
1.5
1.6
Appendix 9
equally, the study should be rejected unless no other evidence is available. If the study
is used as evidence, it should be treated with caution and given a low quality rating.
1.7
If some significant clinical outcomes have been ignored, or not adequately taken into
account, the study should be downgraded. It should also be downgraded if the measures used are regarded as being doubtful in any way or applied inconsistently.
1.8
The number of patients that drop out of a study should give concern if the number is
very high. Conventionally, a 20% drop-out rate is regarded as acceptable, but this may
vary. Some regard should be paid to why patients drop out, as well as how many. It
should be noted that the drop-out rate may be expected to be higher in studies
conducted over a long period of time. A higher drop-out rate will normally lead to
downgrading, rather than rejection, of a study.
1.9
In practice, it is rarely the case that all patients allocated to the intervention group
receive the intervention throughout the trial, or that all those in the comparison group
do not. Patients may refuse treatment, or contraindications arise that lead them to be
switched to the other group. If the comparability of groups through randomisation is
to be maintained, however, patient outcomes must be analysed according to the group
to which they were originally allocated, irrespective of the treatment they actually
received. (This is known as intention-to-treat analysis.) If it is clear that analysis is
not on an intention-to-treat basis, the study may be rejected. If there is little other
evidence available, the study may be included but should be evaluated as if it were a
non-randomised cohort study.
1.10
Appendix 9
Section 2 relates to the overall assessment of the paper. It starts by rating the
methodological quality of the study, based on the responses in Section 1 and using the
following coding system:
All or most of the criteria have been fulfilled.
Where they have not been fulfilled, the conclusions of the study or
review are thought very unlikely to alter.
Relevant questions:
Guideline topic:
Checklist completed by:
SECTION 1: INTERNAL VALIDITY
In a well conducted cohort study:
Well covered
Not addressed
Adequately addressed Not reported
Poorly addressed
Not applicable
SELECTION OF SUBJECTS
1.2 The two groups being studied
are selected from source
populations that are comparable
in all respects other than the
factor under investigation.
Well covered
Not addressed
Adequately addressed Not reported
Poorly addressed
Not applicable
Well covered
Not addressed
Adequately addressed Not reported
Poorly addressed
Not applicable
Appendix 9
assessed and taken into account
in the analysis.
1.5 What percentage of individuals
or clusters recruited into each
arm of the study dropped out
before the study was completed?
1.6 Comparison is made between
full participants and those lost
to follow-up, by exposure status.
Well covered
Not addressed
Adequately addressed Not reported
Poorly addressed
Not applicable
ASSESSMENT
1.7 The outcomes are clearly defined. Well covered
Not addressed
Adequately addressed Not reported
Poorly addressed
Not applicable
1.8 The assessment of outcome is
made blind to exposure status.
Well covered
Not addressed
Adequately addressed Not reported
Poorly addressed
Not applicable
Well covered
Not addressed
Adequately addressed Not reported
Poorly addressed
Not applicable
Appendix 9
SECTION 2: OVERALL ASSESSMENT OF THE STUDY
2.1 How well was the study done to
minimise the risk of bias or
confounding, and to establish a
causal relationship between
exposure and effect?
Code , or
*A cohort study can be defined as a retrospective or prospective follow-up study. Groups of
individuals are defined on the basis of the presence or absence of exposure to a suspected
risk factor or intervention. This checklist is not appropriate for assessing uncontrolled studies
(for example, a case series where there is no comparison [control] group of patients).
Appendix 9
1.1
Unless a clear and well-defined question is specified, it will be difficult to assess how
well the study has met its objectives or how relevant it is to the question to be
answered on the basis of its conclusions.
1.2
Study participants may be selected from the target population (all individuals to
which the results of the study could be applied), the source population (a defined
subset of the target population from which participants are selected) or from a pool
of eligible subjects (a clearly defined and counted group selected from the source
population). It is important that the two groups selected for comparison are as similar as possible in all characteristics except for their exposure status or the presence of
specific prognostic factors or prognostic markers relevant to the study in question. If
the study does not include clear definitions of the source populations and eligibility
criteria for participants, it should be rejected.
1.3
This question relates to what is known as the participation rate, defined as the
number of study participants divided by the number of eligible subjects. This should
be calculated separately for each branch of the study. A large difference in participation rate between the two arms of the study indicates that a significant degree of
selection bias may be present, and the study results should be treated with considerable caution.
1.4
If some of the eligible subjects, particularly those in the unexposed group, already
have the outcome at the start of the trial, the final result will be biased. A wellconducted study will attempt to estimate the likelihood of this occurring and take it
into account in the analysis through the use of sensitivity studies or other methods.
438
Appendix 9
1.5
The number of patients that drop out of a study should give concern if the number is
very high. Conventionally, a 20% drop-out rate is regarded as acceptable, but in
observational studies conducted over a lengthy period of time a higher drop-out rate
is to be expected. A decision on whether to downgrade or reject a study because of a
high drop-out rate is a matter of judgement based on the reasons why people drop out
and whether drop-out rates are comparable in the exposed and unexposed groups.
Reporting of efforts to follow up participants that drop out may be regarded as an
indicator of a well-conducted study.
1.6
For valid study results, it is essential that the study participants are truly representative of the source population. It is always possible that participants who drop out of
the study will differ in some significant way from those who remain part of the study
throughout. A well-conducted study will attempt to identify any such differences
between full and partial participants in both the exposed and unexposed groups. Any
indication that differences exist should lead to the study results being treated with
caution.
1.7
Once enrolled in the study, participants should be followed until specified end points
or outcomes are reached. In a study of the effect of exercise on the death rates from
heart disease in middle-aged men, for example, participants might be followed up
until death, reaching a predefined age or until completion of the study. If outcomes
and the criteria used for measuring them are not clearly defined, the study should be
rejected.
1.8
If the assessor is blinded to which participants received the exposure, and which did
not, the prospects of unbiased results are significantly increased. Studies in which this
is done should be rated more highly than those where it is not done or not done
adequately.
439
Appendix 9
1.9
Blinding is not possible in many cohort studies. In order to assess the extent of any
bias that may be present, it may be helpful to compare process measures used on the
participant groups for example, frequency of observations, who carried out the
observations and the degree of detail and completeness of observations. If these
process measures are comparable between the groups, the results may be regarded
with more confidence.
1.10
1.11
The inclusion of evidence from other sources or previous studies that demonstrate the
validity and reliability of the assessment methods used should further increase confidence in study quality.
1.12
1.13
Appendix 9
more highly rated as a source of evidence. The report of the study should indicate
which potential confounders have been considered and how they have been assessed
or allowed for in the analysis. Clinical judgement should be applied to consider
whether all likely confounders have been considered. If the measures used to address
confounding are considered inadequate, the study should be downgraded or rejected,
depending on how serious the risk of confounding is considered to be. A study that
does not address the possibility of confounding should be rejected.
1.14
Confidence limits are the preferred method for indicating the precision of statistical
results and can be used to differentiate between an inconclusive study and a study that
shows no effect. Studies that report a single value with no assessment of precision
should be treated with caution.
Section 2 relates to the overall assessment of the paper. It starts by rating the
methodological quality of the study, based on the responses in Section 1 and using the
following coding system:
All or most of the criteria have been fulfilled.
Where they have not been fulfilled, the conclusions of the study or review
are thought very unlikely to alter.
441
Appendix 10
APPENDIX 10:
OUTCOMES
A large number of outcomes are reported by intervention studies in people with
borderline personality disorder no doubt because of the multi-symptom nature of the
disorder, and the fact that the diagnosis does not include core symptoms as is the case
for other mental disorders, such as depression. The problem is compounded by the
large number of rating scales available to measure each outcome, including both
clinician- and self-rated versions. The problem is further exacerbated by the relatively
low number of studies undertaken in people with borderline personality disorder.
To address these problems, the GDG drew up a list of outcomes reported in RCTs
reviewed by two existing systematic reviews, one of pharmacological treatments
(Binks et al., 2006a) and the other of psychological treatments (Binks et al., 2006b).
Each outcome was then allocated to a category (for example, symptoms depression,
harm, general psychiatric morbidity). The outcomes reported within each category
were then examined to assess whether they could be combined in meta-analysis. This
was done by examining the scales (where relevant publications were available and/or
using handbook published by the APA [2000]) to assess how many items they had in
common. This was undertaken initially for those outcomes reported in the pharmacological studies. A special advisor with expertise in undertaking trials in people with
borderline personality disorder was appointed to advise with this process (see
Appendix 3).
The following general rules were adopted when deciding whether to include or
exclude a rating scale. The scale had to have been published in a peer-reviewed journal (including validation data), and it had to report an outcome relevant to the guideline. When deciding whether to combine scales in meta-analysis, the following
additional rules were adopted: clinician-rated scales were not combined with selfreport scales, and the items in the scale had to fairly closely match another scale to be
combined.
As studies were reviewed by the GDG that were not included in the existing
systematic reviews used to draw up the initial outcome lists, additional outcomes
were added to the master list. These were assessed in the same way. Note that
dichotomous outcomes based on simple events counts, such as number of episodes of
self-harm, were not part of this exercise.
The list of outcomes is in Table 124 together with some notes. Table 125 shows
scales arranged by category (domain) with notes on whether they were considered
combinable in meta-analysis. Table 126 suggests a possible ranking of the outcomes.
442
Aggression
AIAQ (Anger,
Irritability, and
Assault
Questionnaire)
AIMS (Abnormal
Involuntary
Movement Scale)
Behaviours
acting out
Harm
Symptoms
depression
Category
ADI (Atypical
Depression
Inventory)
Scale
Continued
Useable
Useable
Comment
Appendix 10
443
444
Symptoms
aggression
Symptoms
anxiety
Category
AQ (Aggression
Questionnaire)
Scale
Useable
Comment
Appendix 10
BIS (Barratt
Impulsiveness Scale)
BHS (Beck
Hopelessness Scale)
BDI (Beck
Depression Inventory)
Barratt, 1965
Different versions available - BISII intended for ages 13.
Beck, 1988
Well-established scale
(Higher is worse)
Barnes, 1989
Well-known scale for measuring
effects of psychotropic medication,
usually antipsychotics
BARNES (Barnes
Akathisia Scale)
Symptoms
impulsiveness
Symptoms
hopelessness
Symptoms
depression
Symptoms
hostility
Harm
Useable
Continued
Useable
Useable
Useable
Appendix 10
445
446
BPDSI (Borderline
Personality
Disorder Severity
Index) [semistructured interview]
Scale
Symptoms
impulsiveness
Category
Comment
Appendix 10
BSI (Brief
Symptom
Inventory)
Guy, 1976
Weak measure as based on
subjective opinion
Original scale by Guy, 1976
Rated 1 to 7. 1 very much
improved.
CGI-I (Clinical
Global Impressions
Improvement Scale)
Global
functioning
Global
functioning
Behaviours
suicidal
ideation
General
psychiatric
morbidity
General
psychiatric
morbidity
Borderline
Syndrome Index
Derogatis, 1993
Derived from SCL-90 to reflect
psychological symptom patterns,
53-item Likert scale, nine
symptom dimensions.
Severe psychopathology
BPRS (Brief
Psychiatric Rating
Scale)
447
Continued
Not extracted
Useable
Useable
Appendix 10
448
EuroQOL
DES (Dissociative
Experiences Scale)
Scale
Quality of life
Symptoms
dissociation
Category
Useable
Comment
Appendix 10
Social
functioning
Global
functioning
Global Adjustment
Scale
GAS (Global
Assessment Scale)
Global
functioning
APA, 1987
Established scale
GAF (Global
Assessment of
Functioning)
Behaviours
substance use
EuropASI (European
Addiction Severity
Index)
Useable
Useable
Useable
Not extracted
Continued
Appendix 10
449
450
Index from SCL-90 (also BSI)
essentially a mean of all items.
GSI (Global
Severity Index)
HADS (Hospital
Anxiety and
Depression Scale)
Scale
Symptoms
depression/
anxiety
Global
functioning
(mental
distress)
Social
functioning
Category
Useable
Useable
Comment
Appendix 10
Unpublished scale
HDQ (Hysteroid
Dysphoria
Questionnaire)
IMPS (Inpatient
Multidimensional
Rating Scale)
Hamilton, 1959
A 21-item scale, initially designed
as indicator of severity of anxiety
neurosis, which is no longer a
psychiatric term. Does not focus
on symptoms of GAD (DSM-IV
definition) for example, worry
which is key feature of GAD is
less emphasised than phobic
symptoms, and symptoms of autonomic arousal, which are no
longer part of definition of GAD
feature prominently
HARS (Hamilton
Anxiety Rating
Scale)
HRQ (Helping
Relationship
Questionnaire)
Hamilton, 1960
Clinician-rated depression scale;
well established
Symptoms
schizotypal,
psychoticism
Symptoms
anxiety
Symptoms
depression
Continued
Not relevant
Useable
Appendix 10
451
452
MADRS
(Montgomery and
Asberg Depression
Rating Scale)
LPC (Lifetime
Parasuicide Count)
IIP (Inventory of
Interpersonal
Problems
circumflex version)
Scale
Symptoms
depression
Behaviours
parasuicide
Social
functioning
Category
Useable
Not useable
Not used
Comment
Appendix 10
OAS-M (Overt
Aggression Scale
Modified)
Symptoms
aggression
Symptoms
aggression
Continued
Useable
Appendix 10
453
454
Hyler, 1994
APA handbook assesses PDQ-4
assume similar to this best used
as screening instrument as high
false-positive rate and best used
with Clinical Significance Scale,
which is a brief interview
PDQ-DSM-IV
(Personality
Diagnostic
Questionnaire,
DSM-IV version)
General
psychiatric
functioning
Behaviours parasuicide
PDRS (Personality
Disorder Rating
Scale)
PHI (Parasuicide
History Interview)
Diagnosis
General
psychiatric
morbidity
PANSS (Positive
and Negative
Syndrome Scale)
General
psychiatric
morbidity
Category
PAI (Psychiatric
Assessment
Interview)
Scale
Useable
Not extracted
Comment
Appendix 10
SAS-SR (Social
Adjustment
Scale-Self-Report)
SAS-I (Social
Adjustment Scale
Interview)
RLISC (The
Reasons for Living
Inventory, Survival
and Coping Scale).
(Higher is worse)
POMS (Profile of
Mood States)
Social
functioning
Social
functioning
Suicidal
ideation
General
psychiatric
morbidity
Useable
Useable
Not extracted
Continued
Appendix 10
455
456
Diagnosis
General
psychiatric
morbidity
SCL-90 (Symptom
Checklist-90)
SAS-SR LIFE
(Social Adjustment
Scale Longitudinal
Interview Follow-up)
SCID-II BPD
(Structured Clinical
Interview for DSMIV borderline
personality disorder)
Dimensional score
Category
Social
functioning
Scale
Not extracted
Not extracted
Comment
Appendix 10
Social
functioning
Social
functioning
SFQ (Social
Functioning
Questionnaire)
(Higher is worse)
General
psychiatric
morbidity
Derogatis, 1994
Intended as a quick screening
instrument, as measure of the
outcome/status of psychopathology
nine constructs: somatisation,
obsessive-compulsiveness, interpersonal relationships, depression,
general anxiety, anger and hostility, phobic anxiety, paranoid
ideation, psychoticism. Contains
only minor reviews of SCL-90
Scores given either as raw scores
or t-values
SCL-90-R
(Symptom Check
List 90 Revised)
Useable
Useable
As for SCL-90
Continued
Appendix 10
457
458
Simpson & Angus, 1970
Well-established scale reporting side
effects of psychotropic medication
particularly antipsychotics
Hargreaves, 1968
SNOOP (Systematic
Nurses Observation
of Psychopathology)
Social and
Occupational
Functioning
Assessment Scale
Schizotypal
Symptom Inventory
Simpson-Angus scale
Scale
Symptoms
schizotypal
symptoms
Behaviours
suicidal
ideators
Behaviours
suicidal
ideation
Global
functioning
General
psychiatric
morbidity
Harm
Category
Useable
Useable
Useable
Comment
Appendix 10
Symptoms
anger
STAXI (Spielberger
Anger Expression
Scale/State-Trait
Anger Expression
Inventory)
Symptoms
impulsivity
Symptoms
anger
STAS-T
(Spielberger StateTrait Anger Scale)
(Higher is worse)
Symptoms
anxiety
STAI (Spielberger
State-Trait Anxiety
Inventory)
Continued
Predecessor of STAXI
Appendix 10
459
460
Youth/Young Adult
Self-Report
WSIAP (Ward
Scale of Impulse
Action Patterns)
THI (Treatment
History Interview)
TBR (Target
Behaviour Ratings)
Scale
Used for
internalising
and
externalising
psychopathology
Quality of life
Global
functioning
Impulsivity
Social
functioning
Symptoms/
behaviours
as reported
Category
Useable
Not extracted
Comment
Appendix 10
Appendix 10
Table 125: Rating scales by domain with notes on possibility of combining
scales in meta-analysis
Domain
Scales
Notes
Acting out
AOS
No information available
single scale
Aggression
AQ (s)
MOAS (s)
OAS-M
Anger
Hostility
BDHI
POMS anger subscale (s)
PCL-90 hostility scale (s)
STAS-T
Spielberger Anger
Expression
Scale/STAXI (s)
Anxiety
BAI (s)
HARS
SCL-90 anxiety
subscale (s)
STAI
Depression
ADI
BDI (s)
HRSD
MADRS
POMS depression
subscale (s)
SCL-90 depression
subscale (s)
Dissociation
DES
Single measure
General functioning
CGI
GAF
GAS
Appendix 10
Table 125: (Continued)
Domain
Scales
General psychiatric
morbidity
Borderline Syndrome
Index
BPRS
BSI
PANSS
PDRS
POMS
Psychiatric Assessment
Interview
SCL-90
SNOOP
Impulsiveness
BIS(s)
BPDSI (impulsiveness
subscale)
STIC (s)
WSIAP
Service use
THI
Social functioning
IIP (s)
SAS LIFE (provides
GAS scores) (s)
SAS Interview
SHI (results in GSA
based on SAS)
Substance use
EuropASI
Suicidal ideation
BSSI
RLISC
SSI
Suicide/self-harm
Impulsiveness
BPDSI (parasuicide
subscale)
LPC
PHI
S = self-report
462
Notes
Several seem to be aimed at
measuring psychotic
symptoms
Several derivations of others
(BSI, SCL-90, IMPS)
Some seem to be created
for the study
Combine:
BPRS and PANSS
BSI, SCL-90 and IMPS
Little available information
about these scales, so hard to
judge these. Ward Scale was
adapted for the study (Soloff
et al., 1993) so can not use
No information available
single scale
Used in modified forms in
studies
Not combinable: mix of
self-rated and clinicianrated
Only BSSI in APA. SSI was
adapted for a particular
study (Soloff et al., 1993)
and RLISC only used by
one study (Linehan et al.,
1991) and data not reported
Behaviours
Harm
Acting out
AOS
Parasuicide, suicide and self-harm
BPDSI (parasuicide subscale), LPC, PHI,
SSHI
Substance use
EuropASI
THI
Rating scales
Example outcomes
Service use
Medium importance
User experience
Mental distress
Outcome category
High importance
Social functioning
Appendix 10
463
464
Overall diagnosis
Low importance
Symptoms
Outcome category
Example outcomes
Rating scales
Appendix 10
Appendix 11
APPENDIX 11:
PHARMACOLOGY PEER REVIEWER
CONSULTATION TABLE
Please see tables on pages 466492.
465
466
version.
20Please
General (also
6.13)20
Section
Comments
Developers Response
note that the section numbers correspond to the numbers in the consulation draft of Chapter 6 and may not correspond precisely to the published
Paul Soloff
Peer Reviewer
Appendix 11
Paul Soloff
6.1 Introduction
Continued
Appendix 11
467
468
Drug trials with people with borderline
personality disorder are particularly prone to
the placebo effect. Another editorial opinion
with no empirical support. Compared to
other psychiatric disorders? Placebo effect is
prominent in most drug trials with psychiatric subjects, not limited to borderline
personality disorder.
outcomes . . . do not directly measure symptoms making up the diagnosis . . . aggression
and depression. Please clarify sentence and
intent. Aggression is a target symptom
because it is a dimensional trait in borderline
personality disorder. Depression is measured
because it is part of affective dysregulation,
a key dimension in borderline personality
disorder. Since you do discuss symptomspecific treatments later in the text, it would
be useful to acknowledge that a symptomspecific approach to drug trials for the
borderline personality disorder syndrome
will involve outcome measurements defined
for the symptom, not the borderline
personality disorder syndrome as a whole.
6.1.3
Paul Soloff
Comments
6.1.2 placebo
effect
Section
Paul Soloff
Peer Reviewer
Developers Response
Appendix 11
6.2.1 para.4.
6.3.3
6.3.3 comment
Paul Soloff
Paul Soloff
Paul Soloff
Paul Soloff
Continued
Appendix 11
469
470
Thank you, we have removed the
sentence.
6.4.4. comment on
antidepressants
6.5.2 omega-3
fatty acids
comment
Paul Soloff
Paul Soloff
Developers Response
Comments
6.3.6 comment
Section
Paul Soloff
Peer Reviewer
Appendix 11
Paul Soloff
Paul Soloff
6.11 Summary
6.12 recommendations
6.7.3 aggression
comment
Continued
Appendix 11
471
472
Table 56 Drugs
6.14 Management
of crises
Paul Soloff
Section
Paul Soloff
Peer Reviewer
Thank you. We recommend the treatment of comorbidities but the data are
not strong enough to recommend the
treatment of traits. We had some
concerns about the topiramate and
aripiprazole studies by study group
led by Nickel because they were very
positive compared with other studies.
Since this research group had
completed a large number of very
positive studies across a wide range of
disorders (including non-psychiatric
disorders) we therefore did not
include these studies when drawing up
our overall conclusions about the
dataset.
Thank you, we have substantially
amended this paragraph to make our
meaning clearer. We found no
evidence that supports the use of any
specific drug or drugs in the crisis
Developers Response
Comments
Appendix 11
General 6.12
General
Paul Soloff
Roger
Mulder
Thank you.
Continued
Thank you, but we feel that the limitations are in the data (that is, paucity
of well-conducted RCTs) rather than
in our methods. The recommendations
will reflect the lack of good evidence
and acknowledge the poor evidence
base.
Appendix 11
473
474
On page 3 under the heading diagnosis
there is a comment that some trials exclude
participants with any comorbid axis I disorder. I wonder whether there needs to be a
comment that some trials do not specify
whether they exclude axis I disorders or not,
making interpretation difficult. I also think it
is reasonable to say that in the final sentence
this may reduce generalisability since most
(rather than many) people with borderline
personality disorder have also an axis I
disorder.
Page 3
Roger
Mulder
Developers Response
Comments
Opening
paragraph
Section
Roger
Mulder
Peer Reviewer
Appendix 11
Page 5
Page 33
Roger
Mulder
Roger
Mulder
Continued
Appendix 11
475
476
Thank you. This is very difficult to do
systematically and we consider that
we have used all relevant studies of
people with a diagnosis of borderline
personality disorder. Also, it is very
easy for us to suggest that when drug
effects are being shown that this is a
consequence of treating a comorbid
disorder, but of course we cannot
dissect drug effects by diagnosis in
this way.
Thank you, we have discussed this
issue in the introduction to the chapter
(under placebo effect).
Clinical summary
Roger
Mulder
Developers Response
Comments
Page 33
Section
Roger
Mulder
Peer Reviewer
Appendix 11
Comorbidity
General
Roger
Mulder
Roger
Mulder
Continued
Appendix 11
477
478
Overall, I think the guidelines are very good.
The fact that many borderline patients
receive multiple medications with such a
weak evidence base is concerning but hardly
the guideline committees fault.
2nd paragraph: This subdivision of symptoms in BPD . . . There is some rationale for
this. The first comes from the paper by Siever
and Davis in American Journal of Psychiatry
(December 1991) where they propose these
four dimensions underlying the pathophysiology (biology) of personality disorders, and
the second comes from Soloffs (1998) paper,
Symptom-oriented psychopharmacology for
personality disorders. Journal of Practical
Psychiatry and Behavioural Health, 4, 3-11.
These latter ideas were then incorporated
into Soloffs algorithms for psychopharmacology of borderline personality disorder
published in Bulletin of the Menninger Clinic
and Psychiatric Clinics of North America
(April 2000).
6.1
Ken Silk
Comments
General
Section
Roger
Mulder
Peer Reviewer
Thank you.
Developers Response
Appendix 11
6.1.1
6.1.2
6.1.2
6.1.2
Ken Silk
Ken Silk
Ken Silk
Ken Silk
Thank you.
Thank you.
Continued
Appendix 11
479
480
Ken Silk
Peer Reviewer
6.1.2
Section
Comments
Developers Response
Appendix 11
Appendix 11
481
482
We have brought this to the attention
of the relevant journal and have written to the relevant authors. The matter
is being further investigated and we
felt that we could not include these
studies when drawing up our overall
conclusions about the dataset.
Thank you, but the Links study is a
cross-over trial which we can not use
in meta-analyses, and the Sheard
study is for the antisocial personality
disorder guideline.
6.2.1
6.2.2
Ken Silk
Ken Silk
Developers Response
Comments
6.1.6
Section
Ken Silk
Peer Reviewer
Appendix 11
6.2.3
6.2.5
Ken Silk
Ken Silk
Continued
Appendix 11
483
484
Thank you, but we assume that if the
study is more than 5 years old the
authors are unlikely to remember the
necessary details (and may not have
the data since this is the limit of the
requirement of most journals regarding retaining data) to answer queries
accurately. This is a policy we adopt
across all the guidelines we produce.
Thank you, this relates to the issues of
comorbidity and whether individual
symptom dimensions can be treated
separately. It is very easy for us to
suggest that when drug effects are
being shown that this is a consequence of treating a comorbid disorder, but of course we cannot dissect
6.3.6
Ken Silk
Developers Response
Comments
6.3.5
Section
Ken Silk
Peer Reviewer
Appendix 11
6.3.8
6.4.2
Ken Silk
Ken Silk
Continued
Appendix 11
485
486
Thank you, we will include this in the
analysis of the data by outcome later
in the chapter (section on depression).
Thank you.
6.5.2
Ken Silk
Developers Response
Comments
6.4.3
Section
Ken Silk
Peer Reviewer
Appendix 11
6.7.6
6.11
6.12
6.14
Ken Silk
Ken Silk
Ken Silk
Ken Silk
Very good.
I like Table 56 very much but am still sceptical about divalproex and depression.
Thank you.
Thank you.
Continued
Appendix 11
487
488
Ken Silk
Peer Reviewer
6.17.1
Section
You make the statement that one should
discontinue ineffective medication following a reasonable trial. I might suggest
something stronger. If a medication is ineffective after a reasonable period of time,
then it should be discontinued before trying
a different medication. There is little in the
psychiatric literature except for some recent
but not very powerful findings from the
STAR*D study that augmenting one medication with another results in better clinical
outcome. Psychiatric medications are not
benign and side effects are not uncommon.
Weight gain to a greater or lesser extent is
often common save for topiramate and
zisprasidone. It is unwise to try augmenting
one medication with another if the only
definitive result might be weight gain (there
is a Zanarini paper on this). Also, we are
often dealing with people who have poor
self-esteem and a poor body image and to
help these people gain weight does not help
their overall self-esteem.
Comments
Developers Response
Appendix 11
General
6.1
John Oldham
John Oldham
Continued
Thank you.
Appendix 11
489
490
Would change not always representative at
end of first paragraph to not necessarily
prototypical.
Under Placebo effect, what is the basis for
the claim that people with borderline personality disorder are particularly prone to the
placebo effect? Is there a reference?
Is there a justification cited elsewhere for
including unpublished studies?
6.1.4
6.1.6
6.2.1
John Oldham
John Oldham
John Oldham
Comments
6.1.2
Section
John Oldham
Peer Reviewer
Developers Response
Appendix 11
6.3.5
John Oldham
Thank you.
Continued
6.2.5
John Oldham
*This
6.2.2
John Oldham
Appendix 11
491
Same as above.
6.12.1.1
6.14.1
6.15.2?
John Oldham
John Oldham
John Oldham
Comments
6.4.4
Section
John Oldham
Peer Reviewer
492
As above.
Developers Response
Appendix 11
Appendix 12
APPENDIX 12:
SEARCH STRATEGIES FOR THE IDENTIFICATION
OF HEALTH ECONOMICS EVIDENCE
Search strategies for the identification of health economics and quality-of-life studies.
1. Guideline topic search strategies
Appendix 12
12. (dsm and (axis and II))
13. (#9 OR #10 OR #11 OR #12)
14. (#8 OR #13)
494
Appendix 13
APPENDIX 13:
QUALITY CHECKLIST FOR ECONOMIC STUDIES
Full economic evaluations
Author:
Title:
Date:
Study design
Yes
No
NA
Data collection
495
Appendix 13
10. Details of currency of price adjustments for inflation
or currency conversion are given
8. The ranges over which the variables are varied are stated
496
Appendix 13
1.2 Partial economic evaluations
Author:
Title:
Date:
Study design
Yes
No
NA
5. The ranges over which the variables are varied are stated
Data collection
497
Appendix 14
APPENDIX 14:
DATA EXTRACTION FORM FOR ECONOMIC
STUDIES
Reviewer:
Date of Review:
Authors:
Publication Date:
Title:
Country:
Language:
Economic study design:
CEA
CCA
CBA
CA
CUA
CMA
Modelling:
No
Yes
Meta-analysis
Expert opinion
Cohort study
Comments:
Primary outcome measure(s) (please list):
Treatment:
Comparator:
Setting (please describe):
498
Appendix 14
Patient population characteristics (please describe):
Perspective of analysis:
Societal
Other: _________________________
Secondary
Direct non-medical
Lost productivity
direct treatment
inpatient
outpatient
day care
community health care
medication
social care
social benefits
travel costs
caregiver
out-of-pocket
criminal justice
training of staff
Or
staff
medication
consumables
overhead
capital equipment
real estate
Currency: _____________
Others: _____________________________________
Year of costing: ______________
499
Appendix 14
Was discounting used?
Yes, for benefits and costs
500
No
Appendix 15
APPENDIX 15:
EVIDENCE TABLES FOR ECONOMIC STUDIES
PSYCHOLOGICAL AND PSYCHOSOCIAL
TREATMENTS IN THE MANAGEMENT OF
BORDERLINE PERSONALITY DISORDER
BRIEF PSYCHOLOGICAL INTERVENTIONS
Please see tables on pages 502518.
501
502
Source of unit costs:
national sources
Source of clinical
effectiveness data:
RCT (TYRER2003)
Costeffectivness
and costutility
analysis
Results insensitive to
adoption of NICE
perspective; magnitude
of costs in both arms
Probability of MACT
being cost effective:
45% at WTP 20,000
per QALY
Probability of TAU
being cost effective:
60% at any level of
WTP per parasuicide
event avoided
Source of resource
use: RCT
(TYRER2003),
further assumptions
Decision-analytic
modelling
UK
TAU
Costs:
Healthcare: intervention and staff supervision costs, inpatient and outpatient
care, A&E attendances, day hospital,
medication, community services,
primary care
Social services: day centre, social
worker, sheltered workshop, other
Criminal justice system, community
accommodation
Sensitivity analysis for societal perspective: voluntary sector, productivity losses
Interventions:
MACT
Brazier
et al., 2006
(based on
TYRER2003
Results:
Cost effectiveness
Study population
Study design
Data sources
Intervention
details
Study ID
Country
Study type
Quality score:
29/0/6
EuroQol-5D scores
taken directly from
the study in order
to generate QALYs
Perspective:
government (NICE
and societal in
sensitivity analysis)
Currency: UK
Cost year:
2003-2004
Time horizon: 12
months
Discounting: not
needed
Comments
Quality score
(Y/N/NA)
503
Costeffectivness
andcostutility
analysis
UK
Byford
et al., 2003
(TYRER
2003)
TAU
Interventions:
MACT
Source of resource
use estimates: RCT
(N 397) data
based on patient
interviews using an
adapted version of
the Client Service
Receipt Inventory
(CSRI)
Source of clinical
effectiveness data:
RCT (N 430)
Multicentre RCT
(N 480)
Costs: Hospital, community health services, medication, social services, voluntary services, accommodation and living
expenses, criminal justice system,
productivity losses
Probability of MACT
being cost effective:
between 44 and 88%; at
WTP between 0 and
66,0000/QALY, MACT
had higher probability
of being cost effective
compared with TAU
Probability of MACT
being cost-effective:
>90% at any level of
WTP
Perspective:
societal
Currency: UK
Cost year:
1999/2000
Time horizon: 12
months
Discounting: not
needed
QALYs generated
based on EuroQol5D scores
Quality score:
26/0/9
504
Cost-utility analysis
TAU alone
Interventions:
CBT plus
treatment as
usual (CBT)
UK
Intervention
details
Study ID
Country
Study type
Source of unit
costs: local data,
national sources
and patients
reports
Source of
resource use: RCT
(N 106); data
derived from
hospital records
and patient selfreports based on
an adapted version
of the CSRI
Source of clinical
effectiveness
data:
RCT (N 106,
ITT analysis)
Multicentre RCT
(N 106)
People with
borderline
personality
disorder
Study population
Study design
Data sources
Costs:
Intervention costs
Hospital: inpatient, outpatient, day case,
day hospital, A&E
Community day services: day care,
drop-in centre, sheltered workshop
Accommodation
Primary and community care: GP,
nurses, social worker, occupational
therapist, and so on
Criminal justice system: arrests, court,
prison
Patient: travel, childcare, over the
counter medication
Probability of CBT
being cost-effective:
53% at WTP
2,000/QALY; probability falling with
increasing levels of
WTP
Results:
Cost effectiveness
Perspective: NHS,
social services, other
providers and
patients
Currency: UK
Cost year:
2003/2004
Time horizon: 2
years
Discounting: 3.5%
annually
QALYs generated
based on EuroQol5D scores
Quality score: 26/0/9
Comments
Quality score
(Y/N/NA)
505
Cost-effectiveness
and cost-utility
analysis
Transferencefocused
psychotherapy
Interventions:
Schemafocused
cognitive
therapy
Van Asselt
et al., 2008
(GIESENBLOO2006)
The Netherlands
Intervention
details
Study ID
Country
Study type
Source of unit
costs: national
prices and tariffs
Source of
resource use:
RCT (N 86);
structured interviews with study
participants and
therapists
records
Source of clinical
effectiveness data:
RCT (N 85);
Multicentre RCT
(N 86)
People with
borderline
personality
disorder
Study population
Study design
Data sources
Probability of
schema-focused
cognitive therapy
being cost effective:
over 90% at any
level of WTP
Continued
Perspective: societal
Currency: Euros ()
Cost year: 2000
Time horizon: 4
years
Discounting: 4
annually
QALYs generated
based on EuroQol5D scores
Bootstrap simulations performed to
estimate uncertainty
around mean costs
Quality score: 26/2/7
Costs
Healthcare: intervention, telephone
contacts with therapists, other care at
treatment centres, other psychological
treatment, crisis help, first aid, community care, psychiatric and general hospital, physiotherapy, GP, medication,
alternative healers
Non-healthcare: paid help, informal
care, social services
Out-of-pocket expenses, productivity
losses
Total cost per person over 4 years:
Schema-focused cognitive therapy:
37,826
Transference-focused psychotherapy:
46,795 (non-significant difference)
Comments
Quality score
(Y/N/NA)
Results:
Cost effectiveness
506
Study ID
Country
Study type
Intervention
details
Study population
Study design
Data sources
Probability of
schema-focused
cognitive therapy
being cost-effective:
84% at WTP
20,000/QALY;
probability falling
with increasing
levels of WTP
Transference-focused psychotherapy:
29% (after regression analysis with treatment group and BPDSI score as covariates: p 0.035)
Number of QALYs over 4 years:
Schema-focused cognitive therapy: 2.15
Transference-focused psychotherapy:
2.27 (non-significant difference)
Results:
Cost effectiveness
507
Intervention:
Psychodynamic
interpersonal
therapy
Cost analysis
Australia
Intervention
details
Study ID
Country
Study type
Source of unit
costs: national
sources
Before-after
study (N 30)
Source of
resource use:
before-after study
(N 30); data
derived from
medical records
and interviews
with the study
participants
Costs:
Intervention, inpatient care, emergency
hospital care, ambulatory care, diagnostic tests, medication
People with
borderline
personality disorder
Study population
Study design
Data sources
Non-applicable
Results:
Cost effectiveness
Perspective: health
service
Currency: AUS$
Cost year: 1998
Time horizon: 12
months
Discounting: not
needed
Quality score:
10/3/10
Comments
Quality score
(Y/N/NA)
508
Cost-effectiveness
and cost-utility
analysis
Client-centered
therapy
Interventions:
DBT
UK
Intervention
details
Study ID
Country
Study type
Source of unit
costs: national
sources
Source of
resource use:
RCT
(TURNER2000),
other published
RCT, UK survey
of DBT practitioners, further
assumptions
Source of clinical
effectiveness
data: RCT
(TURNER2000)
Decision-analytic
modelling
People with
borderline
personality
disorder
Study population
Study design
Data sources
Costs:
Healthcare: intervention and staff supervision costs, inpatient and outpatient
care, A&E attendances, day hospital,
medication, community services,
primary care
Social services: day centre, social
worker, sheltered workshop, other
Criminal justice system, community
accommodation
Sensitivity analysis for societal perspective: voluntary sector, productivity losses
DBT dominates
client-centered therapy (DBT more
effective and less
costly than clientcentered therapy)
Results:
Cost effectiveness
BDI scores
converted to
EuroQol-5D scores
in order to generate
QALYs
Regression cost
model developed to
link length of inpatient stay and parasuicide events with
costs
Comments
Quality score
(Y/N/NA)
509
Cost-effectiveness
analysis
UK
TAU
Interventions:
DBT
Source of unit
costs: national
sources
Source of
resource use:
RCT (LINEHAN1991),
further assumptions
Source of clinical
effectiveness
data: RCT
(LINEHAN1991)
Decision-analytic
modelling
People with
borderline
personality
disorder
Costs:
Healthcare: intervention and staff supervision costs, inpatient and outpatient
care, A&E attendances, day hospital,
medication, community services,
primary care
Social services: day centre, social
worker, sheltered workshop, other
Criminal justice system, community
accommodation
Sensitivity analysis for societal perspective: voluntary sector, productivity losses
Results insensitive to
adoption of NICE
perspective; magnitude of costs in both
arms increased by
75% when adopting
a societal perspective
Results insensitive to
adoption of NICE
perspective; magnitude of costs in both
arms increased by
75% when adopting
a societal perspective
probability of DBT
being cost effective:
90% at WTP
20,000 per QALY
Continued
510
Cost-effectiveness
analysis
TAU
Interventions:
DBT
UK
Intervention
details
Study ID
Country
Study type
Source of unit
costs: national
sources
Source of
resource use:
RCT (VAN DEN
BOSCH2002),
other published
RCT, UK survey
of DBT practitioners, further
assumptions
Source of clinical
effectiveness data:
RCT (VAN
DENBOSCH2002)
People with
borderline
personality
disorder
Decision-analytic
modelling
Study population
Study design
Data sources
Costs:
Healthcare: intervention and staff
supervision costs, inpatient and
outpatient care, A&E attendances,
day hospital, medication,
community services, primary care
Social services: day centre, social
worker, sheltered workshop, other
Criminal justice system, community
accommodation
Sensitivity analysis for societal perspective: voluntary sector, productivity losses
Results insensitive to
adoption of NICE
perspective; DBT
dominated TAU
when adopting a
societal perspective
Probability of DBT
being cost effective:
65% at any level of
WTP per parasuicide
event avoided
Results:
Cost effectiveness
Regression cost
model developed to
link length of inpatient stay and parasuicide events with
costs
Comments
Quality score
(Y/N/NA)
511
TAU
Interventions:
DBT
Source of unit
costs: national
sources
Source of
resource use:
RCT
(KOONS2001),
other published
RCT, UK survey
of DBT practitioners, further
assumptions
Source of clinical
effectiveness
data: RCT
(KOONS2001)
Decision-analytic
modelling
People with
borderline
personality
disorder
Costs:
Healthcare: intervention and staff supervision costs, inpatient and outpatient
care, A&E attendances, day hospital,
medication, community services,
primary care
Social services: day centre, social
worker, sheltered workshop, other
Criminal justice system, community
accommodation
Sensitivity analysis for societal perspective: voluntary sector, productivity losses
Results insensitive to
adoption of NICE
perspective; magnitude of costs in both
arms increased by
75% when adopting
a societal perspective
Probability of DBT
being cost effective:
5% at WTP 20,000
per QALY
Probability of DBT
being cost effective:
40% at WTP
5,000 per parasuicide event avoided
Continued
BDI scores
converted to
EuroQol-5D scores
in order to generate
QALYs
Regression cost
model developed to
link parasuicide
events with costs
512
Cost-effectiveness
and cost-utility
analysis
TAU
Interventions:
DBT
UK
Intervention
details
Study ID
Country
Study type
Source of
resource use:
RCT
(KOONS2001),
other published
RCT, UK survey
of DBT practitioners, further
assumptions
Source of clinical
effectiveness
data: RCT
(KOONS2001)
Decision-analytic
modelling
People with
borderline
personality
disorder
Study population
Study design
Data sources
Costs:
Healthcare: intervention and staff supervision costs, inpatient and outpatient
care, A&E attendances, day hospital,
medication, community services,
primary care
Social services: day centre, social
worker, sheltered workshop, other
Criminal justice system, community
accommodation
Sensitivity analysis for societal
perspective: voluntary sector,
productivity losses
Probability of DBT
being cost effective:
40% at WTP
5,000 per parasuicide event avoided
Results:
Cost effectiveness
BDI scores
converted to
EuroQol-5D scores
in order to generate
QALYs
Regression cost
model developed to
link parasuicide
events with costs
Discounting: not
needed
Comments
Quality score
(Y/N/NA)
513
Source of unit
costs: national
sources
Probability of DBT
being cost effective:
5% at WTP 20,000
per QALY
514
Source of unit
costs: published
local rates
Source of resource
use: retrospective
collection of
resource use data
from RCT
(N 41); data
taken from case
notes and information from service
providers
Source of clinical
effectiveness
data: N 38
people from RCT
RCT (N 44)
TAU within
general psychiatric services
Cost-consequence
analysis
UK
People with
borderline
personality
disorder
Interventions:
MBT and
partial hospitalisation
Bateman &
Fonagy, 2003
(BATEMAN1999)
Study population
Study design
Data sources
Intervention
details
Study ID
Country
Study type
MBT and partial hospitalisation significantly better than TAU in all outcomes
Costs:
Psychiatric care: inpatient, outpatient,
partial hospitalisation; medication;
emergency room visits
Costs of community support not
included
Results:
Cost effectiveness
Perspective: NHS
Currency: US$
Cost year: not
reported
Time horizon: 18
and 36 months
Discounting: not
undertaken
Quality score:
19/4/12
Comments
Quality score
(Y/N/NA)
515
Cost-effectiveness
and cost-utility
analysis
UK
(based on BATEMAN1999)
TAU within
general psychiatric services
Interventions:
MBT and
partial hospitalisation
Source of
resource use:
RCT (BATEMAN1999),
further assumptions
Source of clinical
effectiveness
data: RCT
(BATEMAN1999)
Decision-analytic
modelling
People with
borderline
personality
disorder
Costs:
Healthcare: intervention and staff supervision costs, inpatient and outpatient
care, A&E attendances, day hospital,
medication, community services,
primary care
Social services: day centre, social
worker, sheltered workshop, other
Criminal justice system, community
accommodation
Sensitivity analysis for societal perspective: voluntary sector, productivity losses
Total cost per person:
MBT and partial hospitalisation:
18,174
TAU: 17,743 (non-significant
difference)
Continued
BDI scores
converted to
EuroQol-5D scores
in order to generate
QALYs
516
Study ID
Country
Study type
Intervention
details
Results insensitive to
adoption of NICE
perspective; magnitude of costs in both
arms increased by
75% when adopting
a societal perspective
Probability of MBT
and partial hospitalisation being cost
effective: 45% at
WTP 20,000 per
QALY
Source of unit
costs: national
sources
Results:
Cost effectiveness
Study population
Study design
Data sources
517
Intervention:
Therapeutic
community
(Henderson
Hospital)
Cost analysis
UK
Intervention
details
Study ID
Country
Study type
Therapeutic communities
Source of unit
costs: local data
regarding healthcare unit costs;
national sources
regarding prison
unit costs
Source of
resource use:
before-after study
(N 24); data
derived from case
notes and questionnaires sent to
study participants
and their GPs
Before-after
study (N 24)
People with
personality
disorder
Study population
Study design
Data sources
Costs:
Hospital: inpatient care including secure
psychiatric bed stays; outpatient
assessments and therapy; day hospital
Prison
Results:
Cost effectiveness
Continued
Comments
Quality score
(Y/N/NA)
518
Cost-effectiveness
analysis
UK
Beecham et al.,
2006 (details in
Chiesa & Fonagy,
2000)
Study ID
Country
Study type
General
psychiatric
care
Therapeutic
community
two-stage
programme:
6 months
inpatient
programme
followed by 18
months outpatient psychosocial therapy
in Cassel
Hospital
Interventions:
Therapeutic
community
one-stage
programme: 12
months inpatient treatment
with no outpatient follow-up
in Cassel
Hospital
Intervention
details
Source of unit
costs: national
sources
Source of
resource use:
RCT (N 108);
data derived from
an adapted
version of the
CSRI filled in by
the study participants
Source of clinical
effectiveness
data:
cohort study
(N 108)
Prospective
cohort study
(N 147)
People with
personality
disorders
Study population
Study design
Data sources
Costs:
Hospital: inpatient, non-inpatient
Mental health care: psychiatrist,
psychologist, CPN, private psychotherapist, other counselling services
Community-based care: GP, social
worker, education classes, employment
services, voluntary services
Accommodation services
Legal services: police, lawyer
One-stage
programme dominated by extended
dominance; onestage programme
less effective than
two-stage
programme at a
similar cost
ICER of two-stage
programme versus
general psychiatric
care 3,405 per additional point gained
on the GAS, 30,304
per point gained on
the GSI and 1,131
per point gained on
PST (two-stage
programme more
effective and more
costly than general
psychiatric care)
Results:
Cost effectiveness
Perspective: NHS,
social services and
criminal justice
system
Currency: UK
Cost year: 1998/99
Time horizon: 12
months following
termination of
treatment
Discounting: not
undertaken
Quality score:
20/4/11
Comments
Quality score
(Y/N/NA)
References
12.
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Abbreviations
13.
ABBREVIATIONS
ADHD
ADI
AIAQ
AIMS
AMED
AOS
AQ
BAI
BARNES
BDHI
BDI
BHS
BIS
BPD
BPDSI
BPQ
BPRS
BSI
BSSI
CA
CAMHS
CAT
CBA
CBT
CCA
CEA
CGI (-BPD, -I)
cost analysis
child and adolescent mental health services
cognitive analytic therapy
cost-benefit analysis
cognitive behavioural therapy
cost-consequences analysis
cost-effectiveness analysis
Clinical Global Impressions (-borderline personality
disorder, -improvement scale)
confidence interval
Cumulative Index to Nursing and Allied Health
Literature
cost-minimisation analysis
community mental health team
central nervous system
care programme approach
community psychiatric nurse
crisis resolution and home treatment team
Client Service Receipt Inventory
cognitive therapy
cost-utility analysis
CI
CINAHL
CMA
CMHT
CNS
CPA
CPN
CRHTT
CSRI
CT
CUA
552
Abbreviations
DBT
DES
DIB
DSM-IV
EAT-26
EMBASE
EQ-5D
EuropASI
Euro-QoL
5-HT
5-hydroxytryptamine
GAD
GAF
GAS
GDG
GRADE
GRP
GSA
GSI
HADS
HARS
HMIC
HMSO
HRSD
HTA
ICD-10
ICER
IIP
IMPS
IPDE
IPT
ITT
number of studies
LPC
MACT
MADRS
Abbreviations
MBT
MEDLINE
MIS
MOAS
mentalisation-based therapy
Compiled by the US National Library of Medicine and
published on the web by Community of Science,
MEDLINE is a source of life sciences and biomedical
bibliographic information
Multi-Impulsivity Scale
McLean Hospital Overt Aggression Symptom Checklist
N/n
NCCMH
NHS
NHS EED
NICE
NIMHE
NNTB
NNTH
NSF
number of participants
National Collaborating Centre for Mental Health
National Health Service
National Health Service Economic Evaluation Database
National Institute for Health and Clinical Excellence
National Institute for Mental Health in England
number needed to treat benefit
number needed to treat harm
National Service Framework
PAI
PANAS
PANSS
PAS
PCT
PDRS
PHI
PI
PILOTS
PTSD
QALY
RCT
RD
RLISC
RR
POMS
PST
PsycINFO
554
Abbreviations
SAS (-I, -SR, -LIFE)
STIC
TAU
THI
treatment as usual
Treatment History Interview
UKCP
WHO QoL
WMD
WSIAP
WTP
ZAN
SASS
SAT-P
SCID (I, II, -NP)
SCL-90 (-R)
SFQ
SHI
SIDP-IV
SIGLE
SIGN
SMD
SNOOP
SOS
SSHI
SSI
STAI (-T)
STAS-T
STAXI
STEPPS
555
9 781854 334770