Anestis et al.

BMC Neurology (2021) 21:34

https://doi.org/10.1186/s12883-021-02062-6

RESEARCH ARTICLE Open Access

Neurologists’ current practice and

perspectives on communicating the
diagnosis of a motor neurodegenerative
condition: a UK survey
Eleftherios Anestis*, Fiona J. R. Eccles, Ian Fletcher and Jane Simpson

Abstract
Background: The communication of a life-changing diagnosis can be a difficult task for doctors with potential
long-term effects on patient outcomes. Although several studies have addressed the experiences of individuals with
motor neurodegenerative diseases in receiving this diagnosis, a significant research gap exists regarding
professionals’ perspectives, especially in the UK. This study aimed to assess UK neurologists’ current practice and
perspectives on delivering the diagnosis of a motor neurodegenerative disease, explore different aspects of the
process and detail the potential challenges professionals might face.
Methods: We conducted an anonymised online survey with 44 questions, grouped into four sections; basic
demographic information, current practice, the experience of breaking bad news and education and training needs.
Results: Forty-nine professionals completed the survey. Overall, participants seemed to meet the setting-related
standards of good practice; however, they also acknowledged the difficulty of this aspect of their clinical work, with
about half of participants (46.5%) reporting moderate levels of stress while breaking bad news. Patients’ relatives
were not always included in diagnostic consultations and participants were more reluctant to promote a sense of
optimism to patients with poorer prognosis. Although professionals reported spending a mean of around 30–40
min for the communication of these diagnoses, a significant proportion of participants (21–39%) reported
significantly shorter consultation times, highlighting organisational issues related to lack of capacity. Finally, the
majority of participants (75.5%) reported not following any specific guidelines or protocols but indicated their
interest in receiving further training in breaking bad news (78.5%).
Conclusions: This was the first UK survey to address neurologists’ practice and experiences in communicating
these diagnoses. Although meeting basic standards of good practice was reported by most professionals, we
identified several areas of improvement. These included spending enough time to deliver the diagnosis
appropriately, including patients’ relatives as a standard, promoting a sense of hope and responding to
professionals’ training needs regarding breaking bad news.
Keywords: Breaking bad news, Diagnosis communication, Patient-provider communication, Neurodegenerative,
Motor neurone disease, Multiple sclerosis, Parkinson’s disease, Huntington’s disease

* Correspondence: [email protected]
Division of Health Research, Faculty of Health and Medicine, Lancaster
University, Lancaster LA1 4YT, UK

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Anestis et al. BMC Neurology (2021) 21:34 Page 2 of 9

Background Method
Breaking bad news is a critical and distressing process The study was approved by both the authors’ host insti-
for patients but also an often stressful and challenging tution’s research ethics committee and the Health Re-
task for clinicians [1, 2] Bad news in medicine refers to search Authority, a unified system for the governance of
‘any information likely to alter drastically a patient’s view health research in the UK.
of his or her future’ (p. 1597) [3] such as the communi- The questionnaire used for this study was constructed
cation of the diagnosis of a potentially life-changing con- after a comprehensive review of the relevant literature
dition. How a diagnosis is delivered can have a long- on breaking bad news and guidelines such as SPIKES,
term impact on patient outcomes such as treatment ad- the Six-Step Protocol for Delivering Bad News [11] and
herence [1], psychological adjustment and involvement the National Institute for Health and Care Excellence
in treatment decision making [4], understanding of the (NICE) guidelines for the management of MND [12],
condition [5] and satisfaction with care [6]. From the MS [13] and PD [14]. It was also largely based on the
doctor’s perspective, breaking bad news can be an emo- questionnaire used by Aoun et al. [15] for a similar study
tionally burdensome and intrinsically difficult task, with on neurologists’ experiences on delivering the diagnosis
factors such as time constraints, intercultural differences of MND in Australia. The first draft of the survey was
in relation to diagnosis disclosure and lack of private reviewed by two practising neurologists for clarity and
space making it even more challenging [7]. relevance and adjustments were made based on their
Most studies on the delivery of bad news have been comments.
conducted within the field of oncology. However, the de- The survey was hosted online on the Qualtrics plat-
livery of bad news can be a critical issue in other medical form and was open for 2 years (from September 2018 to
specialties such as neurology. Storstein [8] argues that September 2020). Eligible participants were medical pro-
when breaking bad news, neurologists deal with specific fessionals, including specialist registrars, practising in
challenges that relate to particular medical consider- the UK who had experience in delivering the diagnosis
ations and the emotional aspects of neurological dis- for at least one of the conditions included in the survey.
eases. In particular, several chronic neurological The survey comprised 44 questions grouped into four
conditions, such as Parkinson’s disease (PD), multiple sections; demographic information, current practice, the
sclerosis (MS) and Huntington’s disease (HD), are incur- experience of breaking bad news and education and
able, have a progressive nature and impact both physical training needs (Additional File 1). It was completed an-
and cognitive functions [8], while others, such as motor onymously, and questions were mainly closed with sev-
neurone disease (MND), can also be more immediately eral open-ended questions where participants were
life threatening [9]. A scoping review of doctors’ and pa- asked to elaborate on their answers or provide any fur-
tients’ perspectives on giving and receiving the diagnosis ther comments. Participants were recruited through the
of MND, MS or PD [10] revealed mixed results regard- Association of British Neurologists (ABN), other associa-
ing patients’ experiences and satisfaction with how diag- tions related to neurology or MNDDs and through col-
nosis delivery was handled. The main factors which laborations with National Health Service (NHS) trusts.
contributed to negative patient experiences were the Data from the closed questions were imported and
often-limited duration of the consultation, inadequate analysed in IBM SPSS 26 software package [16], using
information provision and a perceived insensitive ap- descriptive statistics; means, standard deviations, range
proach by the professional breaking the news. Moreover, and frequencies. In addition, qualitative data from the
the review found a significant research gap on studies open-ended questions of the survey were used to en-
addressing the physicians’ perspectives, which could hance, explain and expand the findings from the analysis
offer a better understanding of the doctor-patient inter- of the quantitative data. Respondents who completed
actions at the time of the diagnosis. less than 50% of the survey (N < 5) were excluded from
The aim of this study was to assess UK neurologists’ the study.
current practice when delivering the diagnosis of a
motor neurodegenerative disease (MNDD), in particular Results
PD, MS, HD and MND. Currently, there are no UK Participants profile
studies on this topic, the aim of the study was to explore Forty-nine professionals responded to the survey; 43
different aspects of the process, such as the setting, dur- consultant neurologists, 4 neurology specialist registrars,
ation and challenges of communicating a diagnosis of one consultant neuropsychiatrist and one clinical fellow.
this nature. In addition, potential factors affecting prac- Participants were mainly male (67%), almost half of
tice and differences between delivering the diagnosis for them were in the 41–50 age group (48%) and had a
different conditions were also explored. As the results mean of 10 years of experience (ranging from less than
are descriptive, no hypotheses were made. one to 23: SD = 6.8). Almost all participants mainly
Anestis et al. BMC Neurology (2021) 21:34 Page 3 of 9

Table 1 Participants’ characteristics that they would sometimes refer patients to other medical
Participants’ role: Number of participants (%) professionals who would then deliver the diagnosis. Quali-
Consultant neurologist 43 (88%) tative comments indicated that they would follow this ap-
Neurology specialist registrar 4 (8%)
proach when they were uncertain about a diagnosis or
they could refer to a specialist clinic.
Consultant neuropsychiatrist 1 (2%)
Clinical fellow 1 (2%)
Gender (one response missing) Setting, time and people involved in the consultation
Male 32 (67%) When asked about the setting of the consultation, 74%
Female 16 (33%) of participants reported ‘always’ delivering the diagnosis
in a private space and 96% stated that ‘most of the time’
Age (one response missing)
or ‘always’ the diagnosis was communicated without any
31–40 13 (27%)
interruptions. In addition, 75% of professionals reported
41–50 23 (48%) always maintaining eye contact with the patient and 75%
51–60 11 (23%) arranged to have suitable seating at the same level as the
61 or older 1 (2%) patient without a desk or barrier.
Experience in delivering the diagnosis On average, professionals reported investing around
30 min for the delivery of the diagnosis for PD (M = 30,
Parkinson’s disease 44 (90%)
SD = 9.3), MS (M = 28.7, SD = 10.4) and HD (M = 29.9,
Multiple sclerosis 41 (84%)
SD = 16.5) and 41 min (SD = 26) for MND. However, a
Motor neurone disease 43 (88%) considerable proportion of participants (21% for PD,
Huntington’s disease 33 (67%) 32% for MS, 39% for HD and 20% for MND) reported
spending 15 to 20 min for the diagnosis consultation and
practised in England, 5 participants mainly practised in 30% of participants reported spending over an hour to
Wales and although all participants practised in the communicate the diagnosis of MND. More than half of
NHS, 12 participants were also practising privately. See professionals (64%) believed patients were given enough
Table 1 for a summary of participants’ demographics. time to ask questions and express their emotions. How-
ever, across conditions, 58–69% of professionals ‘some-
times’ needed more than one consultation to explain
Diagnosis disclosure these diagnoses and 23–35% ‘always’ needed more con-
Most participants had experience in communicating all sultations. One participant explained that diagnosis
four diagnoses under review; 90% of professionals had communication was a more dynamic process, beyond
experience in breaking bad news for PD, 88% for MND, the diagnostic consultation:
84% for MS and 67% for HD. Most of the professionals
who had experience in delivering the diagnosis of HD ‘I do not think that breaking the diagnosis is really a
(73%) had only communicated 1–20 diagnoses, which one-off event (even if you had all the time in the
can be explained by the rarity of the condition and the world), but rather a process that continues through-
diagnosis of onset1 of HD potentially being given mostly out much of the time that you look after an individ-
in specialist clinics. ual as the disease and the patient’s relationship with
The vast majority of professionals (87%) reported always it often change as time goes on.’
disclosing the diagnosis for these conditions to the pa-
tients. Text comments highlighted that it would be ‘funda- Furthermore, 72% of professionals did not refrain from
mentally unethical’ not to inform a patient of their giving a diagnosis at any specific time or day, and those
diagnosis. Participants believed that being honest and who did so explained that they avoided giving bad news
transparent about the diagnosis helped with the manage- at a late appointment or before the weekend if the pa-
ment of the condition and building a relationship with the tient was not accompanied by someone and also before
patient. However, some comments indicated that profes- patients’ birthdays or before holidays such as Christmas.
sionals would not disclose the diagnosis only when pa- Regarding the involvement of other people in the con-
tients had clearly stated that they did not wish to know or sultation, 60% of professionals stated that ‘most of the
when the diagnosis was not definite and further investiga- time’ or ‘always’, patients were asked to bring someone
tion was required. Moreover, 30% of participants reported to the consultation, however 15% reported that patients
1 were not asked to bring someone. In addition, 53% of
In this study we focused on the diagnosis of the onset of HD, the
start of the symptomatic stages of the condition, which can often be participants ‘sometimes’ included other healthcare pro-
years after confirmation of gene positive status fessionals in the consultation and 19% ‘never’ did so.
Anestis et al. BMC Neurology (2021) 21:34 Page 4 of 9

Content of the consultation / information giving assessed themselves as ‘very good’ and none thought
Almost all participants agreed that how the diagnosis they were ‘poor’ at it. For PD and MS, more than half of
was reached (96%), treatment options (96%), the degree the respondents were confident to very confident (63%)
of certainty of the diagnosis (92%) and the course/prog- that patients left the consultation having taken in all the
nosis of the disease (90%) were topics that should be dis- information relevant to them at that point. However, for
cussed with the patient at diagnosis. Causes of the the case of HD and MND, 61 and 58% of professionals
disease (76%) and current research (63%) were also con- respectively were ‘not sure’ to ‘really not confident’ that
sidered important topics to be covered. Additional com- patients had taken in all the relevant information. In
ments showed that neurologists also chose to discuss general, 81% believed patients were ‘somewhat satisfied’
other important topics, such as the family, hereditary to ‘very satisfied’ with how the diagnosis was delivered.
and legal implications of the diagnosis (e.g. driving), in-
formation on the support plan and other healthcare pro- Strategies and training on breaking bad news
fessionals who would be involved in their care and In the last part of the survey, participants were asked to
signposting to related charities and reputable sources of report on the strategies they employed and the training
information. In addition to oral information, 28% of pro- they had received in breaking bad news. Most profes-
fessionals ‘always’ provided patient-tailored information sionals (75.5%) reported not following any specific strat-
in written form and 43% did so ‘most of the time’. Infor- egy or best practice guidelines when delivering an
mation on local support groups and national charities MNDD diagnosis. Those who did explained that they
was ‘always’ shared by about half of the participants for followed NICE guidelines and were familiar with re-
PD, MS and HD and by 67% of participants for MND. search on best practice and breaking bad news. Most
When asked whether they promoted a feeling of opti- professionals (83%) had received some kind of training
mism when delivering a diagnosis, more respondents on breaking bad news, either as a part of their formal
reported ‘probably’ or ‘definitely’ promoting hope in PD education, clinical training or by sitting in with other cli-
(91%) and MS (90%) than HD (39%) and MND (31%). nicians who broke bad news. Qualitative comments also
showed that respondents had learnt how to break bad
Personal experiences and challenges in breaking bad news through experience, advanced communication
news for MNDDs skills training and generic training on breaking bad
Regarding the perceived difficulty of diagnosis commu- news, although the latter had focused on cancer. Around
nication for these conditions, 54% of participants be- 31% had received no training in techniques of respond-
lieved that it was ‘definitely’ and 23% that it was ing to patients’ emotions and, for those who had, they
‘probably’ a difficult task for the physician. Most profes- reported having received such training as a part of their
sionals (74%) agreed that being honest without taking degree or developed these skills through experience and
away hope was the most challenging part of communi- observing others breaking bad news. Finally, most partic-
cating the diagnosis of MNDDs, followed by spending ipants (78.5%) were somewhat to very interested in re-
the right amount of time (47%). Dealing with the pa- ceiving further education on breaking bad news and on
tient’s emotional reaction (25%), involving the family of techniques for how to respond best to patients’ emo-
the patient (14%) and involving the patient or family in tional needs.
decision making (12%) were considered difficult by fewer
participants. When asked about how often they faced Qualitative comments
several potential barriers during a breaking bad news Most qualitative comments given by participants were
consultation, professionals reported that fear of causing related to the challenges of communicating the diagnosis
distress (32.5%), excessive workload (32.5%) and per- of an MNDD. Two common issues for professionals
ceived lack of time (30%), were among the most often were related to limited consultation times and the lack
experienced barriers, which they faced ‘most of the time’ of capacity to schedule a follow-up with the patient soon
or ‘always’. Conversely, fear of the ‘messenger getting after diagnosis with some follow-up appointments
blamed for bad news’ and lack or insufficient training in booked for even 15 months post-diagnosis. Therefore,
breaking bad news were not often experienced as bar- especially in general neurology clinics, participants had
riers. In addition, 46.5% of respondents reported experi- to cover many different topics in one single consultation,
encing moderate and 9% reported high to very high although the official time slot allocated for the appoint-
levels feelings of stress and anxiety during the delivery of ment was not long enough:
these diagnoses, while only 12% reported not experien-
cing such feelings at all. ‘Given current waiting lists for some of my movement
Overall, most professionals (61%) believed they were disorders clinics, it may be 9 months before I next
‘good’ at communicating the diagnosis of a MNDD, 23% see a newly diagnosed PD patient. I therefore not
Anestis et al. BMC Neurology (2021) 21:34 Page 5 of 9

only have to explain the diagnosis, pathogenesis, and delivering the diagnosis of MND to a patient who was
treatment options but also explain the treatment presenting rapid progression or with already advanced
plan and contingencies for possible hiccups to cover symptoms at diagnosis. One professional used the word
a ridiculously large period of time in (officially) fif- ‘despondency’ to describe how they felt when delivering
teen minutes. Is it any surprise my clinics (overruns) such diagnoses.
by several hours.’
‘Insufficient time for vast amount of information to Discussion
be usefully imparted. Pregnancy discussions alone This is the first UK survey study to address doctors’
merit a full consultation.’ practice and experiences in communicating the diagno-
sis of an MNDD.
Conversely, a participant who was also practising pri- Generally, participants seemed to meet the setting-
vately reported that they could ‘see patients again within related standards of good practice [11] in breaking bad
a week to go over questions and discuss treatment plans news by communicating the diagnosis in a private space,
once dust has settled’. avoiding interruptions, arranging suitable seating and
Several professionals talked about this lack of capacity maintaining eye contact with patients. Regarding involv-
as ‘a service delivery issue’, which, apart from limited ing other people in the consultation, there was room for
consultation time, involved insufficient access to nurses improvement since only 21.3% of professionals always
and administrative staff who could coordinate these ap- asked patients to bring someone in consultation, 38.3%
pointments: ‘Someone (is needed) to coordinate (the) did so most of the time and 15% never did. One partici-
pathway so everything (is) available at consultation: rela- pant highlighted the fact that asking a patient to bring
tive, nurse, info etc.’. Specialist clinics seemed to be able someone with them might act as a warning and could
to offer a better service, however one participant com- also increase their distress prior to the consultation and
mented that referrals were not always possible when affect how much information they could absorb. How-
there were no specialist services locally. ever, although involving patients’ relatives in a diagnostic
Apart from organisational factors which affected their consultation can be a challenge for healthcare profes-
practice, professionals addressed how various illness and sionals, they can offer emotional support, serve as the
patient-related factors could affect their diagnostic prac- patient’s advocate and receive important information
tice. Diagnostic and prognostic uncertainty were com- they will need if they act as the patient’s primary care-
mon issues for participants delivering MNDD diagnoses. givers [17, 18]. Moreover, several MNDDs guidelines
One person highlighted feeling ‘pressured’ by patients to specifically recommend or imply that, with the patient’s
give a diagnosis, even though they had not reached diag- agreement, their support network should be present at
nostic certainty. Similarly, it was not always possible to diagnosis [12–14, 19].
share prognostic information, for example regarding the Consultation duration reported by professionals in this
rate of progression and the potential level of future im- survey was not always optimal and qualitative comments
pairment. In addition, it was often commented that the showed that organisational factors affected how much
lack of curative treatments made breaking bad news time they could invested for diagnostic consultations.
more difficult, especially when patients were initially un- Participants reported spending a mean of around 30 min
aware of the incurable nature of their condition. How- to deliver the diagnosis of PD, MS and HD and 41 min
ever, being able to offer symptom management for PD for MND, however there was a considerable percentage
and disease modifying treatments for MS made the of professionals (20–39%) who reported spending 15–20
process of diagnosis delivery more positive. min. The latter falls short compared to the European
On an emotional level, professionals reported several Federation of Neurological Societies (EFNS) recom-
patient-related factors that made breaking bad news mended guideline of 45 to 60 min for the diagnosis of
more challenging: MND [19], however there are no published guidelines
on consultation times for the other MNDDs. These find-
‘At times a patient’s situation particularly resonates ings correspond with both UK [20–22] and international
and this can be emotionally draining on the [23–27] MNDD patient studies which have reported
clinician.’ short consultation times that often led to patient dissat-
isfaction. Even though participants in this study reported
Participants mentioned several cases that were particu- sharing information on how the diagnosis was reached,
larly challenging, such as delivering a PD diagnosis to the impact of the condition on patients’ lives and their
young people, delivering an MS diagnosis to young care plan, they still believed patients left the consultation
women who wanted to have children (‘shattering hopes’), not having taken in all information relevant to them at
delivering an HD diagnosis to people with children or the point of diagnosis, especially for the case of MND
Anestis et al. BMC Neurology (2021) 21:34 Page 6 of 9

and HD. This is possibly linked to limited consultation potentially be linked to participants reporting ‘perceived
times or, as one participant noted, due to patients’ state lack of time’ and ‘fear of causing distress’ as the barriers
of shock which affects how much information they can they often experienced while breaking bad news and
absorb. Professionals reported that they would often qualitative comments indicating that diagnosis delivery
need more than one consultation to fully deliver the could sometimes be emotionally ‘draining’. Despite the
diagnosis. However, this is challenging since, particularly emotional toll of breaking bad news, dealing with pa-
for PD, qualitative comments highlighted issues related tients’ emotional reactions did not seem to present a
to lack of capacity to book early follow-ups with some particular challenge for the participants of this survey.
consultations being booked even 15 months post- However, studies of patients with MNDDs have shown
diagnosis. that patients are often dissatisfied with the lack of em-
Most professionals agreed that diagnosis communica- pathy shown by doctors during diagnosis delivery [10].
tion for MNDDs was a difficult task and being honest The seemingly contradictory finding here in that partici-
without taking away hope was the most challenging as- pants in this survey reported strong competency in this
pect of the consultation, a challenge which has also been domain could either be attributed to participation bias
reported by Aoun’s survey of neurologists in Australia (see limitations below) or different views and expecta-
[15] and professionals working in other medical special- tions between patients and professionals regarding the
ties such as oncology [7]. Participants in this study re- emotional aspects of the consultation.
ported being particularly reluctant to promote a feeling Finally, most participants in this study reported not
of optimism when delivering the diagnosis of HD and following any specific strategy or guidelines when deliv-
MND. As some qualitative comments suggest, this could ering an MNDD diagnosis. Although step-wise protocols
be associated with the poor prognosis for these condi- for breaking bad news have been criticized for poten-
tions, however EFNS guidelines for MND [19] encourage tially focusing more on the process than the people in-
professionals to discuss reasons for hope, such as on- volved, their contribution to the medical practice and
going research, drug trials and the variability of the dis- their emphasis on empathy and individualised informa-
ease and specifically advise against not providing hope tion provision is acknowledged [33]. Despite their use-
during diagnosis. It should also be noted that providing fulness, these protocols, such as SPIKES [11], have been
hope is not always analogous to indicating the possibility developed and have mostly been used within oncology
of a cure. Hope can be generated for the optimal man- settings. In addition, when it comes to MNDDs, only
agement of the condition, in whatever form that has to EFNS [19] and NICE MND [12] guidelines adequately
take. Instilling hope therefore can take many forms and addressed the topic of diagnosis delivery, while, for the
is an important aspect of the patient’s rehabilitation [28]. other conditions, guidance was mostly limited to what
Feelings of hopelessness in people with MND have been kind of information to impart at diagnosis and we found
reported to be more strongly correlated to quality of life no guidelines for HD. This could partially explain why
than their physical functioning [29] and dissatisfaction most participants did not follow any specific strategies
with information delivery can negatively influence pa- when breaking bad news for MNDDs. However, most
tient’s sense of hope [30]. Moreover, a review by Clayton participants in the survey indicated their interest in re-
et al. [31] showed that although most patients ap- ceiving further training on breaking bad news and
proaching end of life prefer honest and accurate infor- responding to patients’ emotions.
mation, they are also able to maintain a sense of hope.
The review suggested that healthcare professionals Implications for research and practice
should recognise and foster different and realistic forms This exploratory survey highlighted several aspects of
of hope relevant to the particular patient and their fam- diagnosis delivery for MNDDs which could be improved.
ily by carefully assessing patients’ information prefer- Limited consultation times and inability to offer early
ences and emphasising on what can be done for them. follow-ups were often reported by participants as factors
Participants in this survey were also asked about the that hampered optimal diagnostic communication. This
emotional aspects of delivering the diagnoses of is potentially linked to staff shortages in neurology, ser-
MNDDs. More than half of professionals reported that vices constraints and the NHS in general being under
they experienced moderate to high levels of stress during strain but highlights the need for organisational changes
diagnosis delivery. This finding is supported by a review which acknowledge the importance of diagnosis delivery
of studies that used self-report and psychophysiological consultations for MNDDs. Beyond longer consultations,
measures and showed that during the communication of there is also a need for early follow-ups so the profes-
bad news, doctors experienced moderate levels of stress, sional can provide all the relevant information and the
with stress reactions lasting for hours or even days after reassurance that patients and their families need at diag-
the diagnosis [32]. The experience of stress could nosis and will also provide the opportunity for patients
Anestis et al. BMC Neurology (2021) 21:34 Page 7 of 9

to express their emotions, prepare questions and make Finally, most participants in this study indicated an
informed decisions regarding their care [34]. When interest in receiving further training in breaking bad
faced with limited consultation times at diagnosis, pro- news and reported low familiarity with published proto-
fessionals should make sure that they provide tailored cols of best practice. Professionals are encouraged to fa-
information to each patient, written information about miliarise themselves with such protocols and best
their condition, discuss their plan of care, reliable practice guidelines for breaking bad news which could
sources of information and support and ensure an early be incorporated as a part of their training. Even though
follow-up, usually with a specialist nurse. Data from our the SPIKES protocol [11] was initially developed for use
survey also showed that, despite recommendations, pa- within oncology, some data indicate its relevance for use
tients were not routinely advised to bring someone to within neurology. In particular, MND patients were
the consultation. It would be worth exploring whether more likely to judge neurologists’ skills as ‘above average’
this varies among conditions and what factors influence when they delivered the news in a way that resembled
this policy. However, we suggest that for the diagnosis of the steps described in SPIKES [35]. Nevertheless, further
all MNDDs, patients are always given the option to be research incorporating both professionals’ and patients’
accompanied by someone. Moreover, it is recommended and families’ needs and perspectives could help develop
that, when it would not cause serious diagnostic delay, more tailored guidelines for neurology.
doctors should avoid delivering the diagnosis before na-
tional holidays or important events for the patient, Limitations
building on the good practice reported by the majority The survey’s relatively small sample size (N = 49) could
in this survey. be considered one of the study’s limitations. However,
Regarding professionals’ manner of delivering these the recent ABN’s Neurology Workforce Survey [36]
diagnoses, our findings suggest that participants were re- identified a serious lack of UK neurologists within the
luctant to provide a sense of hope to patients with MND UK, with the second lowest number of neurologists per
or HD. Despite the severe life-limiting and threatening head of population in Europe. It is estimated that 958
nature of these conditions, professionals should still try are practising in the UK [37] and although 84% of them
to explore and enhance patients’ own concepts of hope run general neurology clinics [36], not all of them will
and share information which could be deemed as posi- deliver the diagnosis for the conditions included here. In
tive [31], such as providing reassurance for effective addition, recruiting NHS healthcare staff in health re-
symptom management and long-term support by a search has been increasingly difficult due to often severe
multi-disciplinary team. This is a topic where more re- staff shortages and pressure being placed on clinicians
search and development of training would be particu- [38]. Ultimately, this is a descriptive survey which gave
larly useful in order to explore professionals’ working in the opportunity to these professionals to report on a sig-
neurology concepts of hope and how these affect their nificant aspect of their clinical practice and, through
practice of breaking bad news. Professionals in this sur- qualitative comments, discuss how it has been affected
vey reported moderate levels of stress when communi- by the current NHS climate. Moreover, the results of
cating an MNDD diagnosis, they acknowledged the this survey could be affected by participation bias. In
difficulty of the task and briefly discussed the emotional particular, it is likely that most people who completed
aspect of being the bearer of such bad news. Further the survey were interested in the topic [39], and thus po-
qualitative research on professionals’ lived experience of tentially better at breaking bad news and acknowledging
communicating these diagnoses would help develop a the complexity of the task, and thus the findings may
deeper understanding on their perspectives and how not be entirely representative of all neurology
they cope with giving these diagnoses on an emotional professionals.
level. Exploring the opportunity for psychological input
and the involvement of a multidisciplinary team in the Conclusion
process of breaking bad news would also be beneficial. Medical professionals delivering the diagnosis of
This knowledge would be useful for developments in MNDDs are faced with the challenge of communicating
the design of medical education in neurology, ad- effectively, but also sensitively, being honest, but also
equately supporting professionals with this challenging providing a sense of hope. This was the first survey in
task and eventually improving the patient experience. the UK to address neurologists’ practice and experiences
In addition, although diagnosis delivery is a critical in communicating these diagnoses. It was clear that for
milestone in patients’ care, future research could also participants of this survey giving such bad news was an
address other forms of breaking bad news in MNDDs intrinsically challenging and stressful task which became
such as the initiation of discussions around advanced even harder due to long waiting times for appointments
directives. in neurology and limited consultation times. Participants
Anestis et al. BMC Neurology (2021) 21:34 Page 8 of 9

reported often spending a sub-optimal amount of time Ethics approval and consent to participate
for these diagnostic consultations and discussed how the The study adhered to relevant guidelines and regulations. It received ethics
approval by the Faculty of Health and Medicine Research Committee of
incurable nature of MNDDs, the uncertainty about the Lancaster University (FHMREC17106) and the HRA (19/HRA/5761).
rate of disease progression and the, occasionally, young Participants had to give informed consent online prior to proceeding to the
disease onset made such diagnostic consultations more survey by confirming that they have read the participant information sheet
and understand their rights as research participants and what is expected
challenging. Nevertheless, participants in this study from them.
showed signs of good practice regarding the setting of
the consultation and providing appropriate and honest Consent for publication
We obtained informed consent for publications by participants of this study.
information at diagnosis. Apart from time restrictions
and issues related to capacity, this study highlights other Competing interests
areas of improvement such as including patient’s family The authors declare that they have no competing interests.
routinely in the appointments and providing some sense
Received: 29 October 2020 Accepted: 21 December 2020
of hope even for conditions with a poor prognosis. Par-
ticipants also reported low familiarity with breaking bad
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