A Systematic Review of Patient Education Strategies For Oncology Patients in Low-And Middle-Income Countries

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The Oncologist, 2023, 28, 2–11

https://doi.org/10.1093/oncolo/oyac206
Advance access publication 22 October 2022
Review Article

A Systematic Review of Patient Education Strategies for


Oncology Patients in Low- and Middle-Income Countries
Karryn Christiansen1, Lori Buswell2, , Temidayo Fadelu*,2,3,
1
Center for Global Health, Colorado School of Public Health, Aurora, CO, USA
2
Division of Population Sciences, Department of Medical Oncology, Dana-Farber Cancer Institute, Boston, MA, USA
3
Harvard Medical School, Boston, MA, USA

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*
Corresponding author: Temidayo Fadelu, MD, MPH, Dana-Farber Cancer Institute, 450 Brookline Avenue, MA-1B-17, Boston, MA 02215, USA.
Tel: +1 617 632 6401; Email: [email protected]

Abstract
Introduction: Patient education can facilitate early cancer diagnosis, enhance treatment adherence, and improve outcomes. While there is
increasing cancer burden in low- and middle-income countries (LMICs), there is little research to inform successful patient education in these
regions. This systematic review summarizes the existing literature on oncology education and evaluation strategies in LMICs, identifies best
practices, and highlights areas which require further investigation.
Methods: The review was conducted using PRISMA guidelines and an a priori protocol. Four databases (Ovid Medline, Cochrane Libraries,
Embase, and Cabi) were searched in December 2021. Two independent reviewers evaluated studies for inclusion. Using a coded data extraction
form, information was collected about the study site, intervention characteristics, and evaluation methods.
Results: Of the 2047 articles generated in the search, 77 met the inclusion criteria. Twenty-four countries were represented; only 6 studies (8%)
were in low-income countries. The most common education methods included technology-based interventions (31, 40%) and visual pamphlets
or posters (20, 26%). More than one education method was used in 57 (74%) studies. Nurses were the most frequent educators (25, 33%).
An evaluation was included in 74 (96%) studies, though only 41 (55%) studies used a validated tool. Patient knowledge was the most common
measured outcome in 35 (47%) studies.
Conclusions: There is limited empiric research on oncology patient education in LMICs. The available data show heterogeneity in education
approaches and gaps in evaluation. Further research to determine successful patient education and evaluation strategies is urgently needed to
improve treatment cancer outcomes in LMICs.
Key words: cancer education; patient education; education materials, LMICs.

Implications for Practice


As the cancer burden rises in low- and middle-income countries (LMICs), it is imperative to implement effective patient education strategies
to facilitate early cancer diagnosis and support treatment adherence. This systematic review summarizes the status of the literature on
oncology patient education in LMICs. Education and evaluation strategies were heterogeneous across the 77 studies identified. Several
gaps were noted, including lack of representation from low-income countries; limited use of an undergirding theory or framework in
development of patient education programs; and insufficient rigor of evaluation. Future studies are required to address these gaps in order
to improve LMIC cancer outcomes.

Introduction 2030, improving cancer management and outcomes in LMICs


Cancer is the second leading cause of death globally with is paramount.5
almost 10 million deaths in 2020, nearly 70% of which Numerous studies have examined the factors associated
occurred in low- and middle-income countries (LMICs).1,2 with higher cancer mortality rates in LMICs compared with
As cancer incidence and cancer-related mortality continue high-income countries (HICs). Some of these factors derive
to rise in LMICs, these countries with weak economic and from the environmental context, such as low access to health-
healthcare infrastructure will be further burdened by prema- care services, low capacity to diagnose or treat in-country,
ture mortality and lost years of productivity.3,4 Consequently, lack of skilled workforce, and poor medical infrastructure.6,7
developing strategies to address this growing burden is an Other factors are attributable to individual behaviors, such as
urgent global public health priority. In order to achieve the delays in seeking healthcare for new symptoms, often result-
sustainable development goals target of reducing premature ing in late-stage cancer diagnoses.8 Reports show that over
mortality from non-communicable disease by one-third by 50% of people diagnosed with breast cancer in LMICs have

Received: 29 June 2022; Accepted: 8 September 2022.


© The Author(s) 2022. Published by Oxford University Press.
This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial License (https://creativecommons.org/
licenses/by-nc/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited. For
commercial re-use, please contact [email protected].
The Oncologist, 2023, Vol. 28, No. 1 3

advanced stages of disease at diagnosis, which is associated have included LMICs have focused on a specific element
higher mortality rates.9 Late cancer presentation may occur (for example, pain or fatigue) or on one cancer type (breast,
for a number of reasons, such as lack of awareness of can- cervical, or colorectal cancer).18-22 For example, a 2021 sys-
cer symptoms or screening resources, fatalist beliefs, fear of tematic review was limited to digital health strategies for
a cancer diagnosis, and societal stigma against people living cervical cancer.18 Hence, the goal of this systematic review
with cancer.10,11 is to comprehensively summarize the literature on oncology
Knowledge gaps are also a key factor impacting an indi- patient education strategies specific to LMICs and to iden-
vidual’s ability to manage their cancer diagnosis, treatment, tify gaps in order to set priorities for future research. This
and side effects. Ultimately, these gaps may also contribute to review includes all cancer types and may involve any stage
poorer outcomes. Health behavior theories suggest that peo- of the cancer continuum, from prevention and early detec-
ple are more likely to adhere to treatment protocols when tion to survivorship. We also aim to capture implementation
they understand the disease and treatment.12 Elements from details of the educational interventions, including evaluation
2 health behavior theories, the Health Belief Model and the methods.
Integrated Behavior Model, were adapted into the frame-
work shown in Fig. 1 to show how knowledge may impact

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patient behaviors such as participation in cancer screenings Materials and Methods
and adherence to treatment protocols.13,14 The framework This systematic review was conducted following the Preferred
demonstrates how knowledge affects an individual’s per- Items for Systematic Reviews and Meta-Analyses-Protocol
ceptions of the severity and threat of an illness, as well as (PRISMA-P) guidelines and an a priori protocol was regis-
how the individual perceives others with the disease. These tered on PROSPERO (2022 CRD42022295995).23,24
perceptions may impact an individual’s intent to engage in a
health-related behavior. An individual’s intention to engage in Search Strategy
a behavior is also affected by their knowledge of the treatment
Four databases were searched for this review: Ovid
process. When patients are knowledgeable about a treatment,
MEDLINE, Embase, the Cochrane Library, and CABI
they often have increased confidence in their ability to receive
Global Health. The search included all publications from
treatment and increased perceived control during the process.
the inception of the databases up to when the search was
The model also shows how the other factors, both internal
conducted, on December 3, 2021. The search strategy was
(such as personal habits) and external (such as transporta-
developed with assistance from a medical librarian using
tion), can moderate the path from intention to engagement,
Medical Subject Headings related to oncology, patient edu-
and ultimately lead to performance of a desired behavior.
cation, and LMICs; a detailed search strategy is included in
Patient education is a potentially modifiable aspect of can-
Appendix I.
cer care delivery that could contribute to better treatment
outcomes and improved quality of life. However, very little
is known in LMICs about optimal oncology patient educa- Eligibility Criteria
tion strategies, such as format of education, duration, type of Eligible studies included all published studies that discussed
educator, and technology use, or about the impact of patient a specific education intervention that targeted oncology
education on care process and outcomes. concepts across the cancer continuum, including screening,
While there have been prior reviews of oncology patient active treatment, palliation, and survivorship. To be eligible
education strategies, they have focused primarily on HICs for inclusion, the study had to occur in an LMIC, as defined
with limited representation of LMICs.15-17 Other reviews that by the 2019 World Bank classification.25 Abstracts, editorials,

Figure 1. Patient knowledge framework adapted from health behavior models.


4 The Oncologist, 2023, Vol. 28, No. 1

and reviews without original data were excluded. Studies that


were not available in English were also excluded from the
review.

Screening, Data Extraction, and Reporting


After the initial search, all records were uploaded to Covidence
systematic review software (Veritas Health Innovation,
Melbourne, Australia), at which point duplicate studies were
removed. Two reviewers independently evaluated 10% of the
studies’ abstracts and compared inclusion decisions to ensure
concordance between reviewers exceeded a predetermined
threshold of 90%. The 2 reviewers then continued, inde-
pendently evaluating the remaining abstracts to determine
eligibility. After this primary screening, a secondary screening
using the same process was conducted to review the full texts

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to determine final inclusion in the review.
A data extraction tool was developed in Research Electronic
Data Capture (REDCap), which 2 reviewers used to extract
data from the included records.26,27 The REDCap tool was
revised by the authors after conducting a pilot test with 6
studies. Similarly, 2 reviewers independently extracted data
from 10% of the articles and compared with ensure agree-
ment. The 2 reviewers then continued independently extract-
ing data from all the remaining articles. The first category of Figure 2. Preferred reporting items for systematic reviews and meta-
data collected was information about the publication, includ- analyses (PRISMA) flow diagram.
ing year, country where the study took place, and type of
cancer diagnosis. Second, data were also collected about the
intervention, including: method of education; who provided
the education; audience (such as patient, spouse, or family (10, 13%) were the most common study locations. Most of
member); where the education was provided; when along the the studies, 47 (61%), occurred in or after 2015. All but one of
cancer continuum the education was offered; whether the the included studies focused on the adult population, and 58
intervention was based on theory; and other intervention fea- (75%) studies targeted a single type of cancer. Of these, breast
tures. If more than one method, educator, or audience was cancer was the most targeted type of cancer with 25 (43%)
mentioned, all were included in data collection. The third cat- studies, followed by gynecologic cancers (13, 22%). Detailed
egory of data collection was around evaluation if one was study characteristics are available in Table 1 and Appendix IV.
conducted, including the type of evaluation performed, what
outcomes were assessed, the timing of the evaluation, and
Intervention Characteristics
the evaluation results. The results were summarized in tables
using descriptive statistics. This summary report follows the Method
PRISMA 2020 checklist (Appendix II ).28 Studies varied on the number of methods used in the educa-
tion intervention. Twenty studies (26%) used a single educa-
tion method; 28 studies (36%) used 2 methods; 21 studies
Results (27%) used 3 methods; and 8 studies (10%) used 4 or more
Search Results methods. The number of methods used in a study were also
A total of 2635 articles were located during the database stratified by country income level, as shown in Appendix III.
search: 890 from Ovid MEDLINE, 974 from Embase, 99 This table suggests that interventions in upper-middle income
from Cochrane Library, and 672 from CABI Global Health. countries are more likely to employ more than one education
Upon importing the records into Covidence, 588 duplicates method compared to low-income countries.
were removed, leaving 2047 articles to be screened. As shown Several different methods of providing education were
in the PRISMA flow diagram (Fig. 2), after the primary described in the educational interventions included in this
screening of abstracts, there were 124 articles remaining for review. The most frequently used technique was techno
potential inclusion. After a secondary screening of full-texts, logy-based interventions in 31 studies (40%). Of these, 20
77 articles remained for data extraction. Primary reasons for (65%) were videos, 4 (13%) used a mobile app, and 4 (13%)
excluding articles at the secondary screening stage included were through short message service (SMS)/text. Although the
wrong intervention (19), unavailability of a full text (16), 31 technology-based interventions were dependent on the
and wrong setting (4). The dual review process resulted in a availability of technology, 11 (35%) of the studies did not
92.7% agreement for the primary abstract screening, and a state whether the device used for the intervention was pub-
100% agreement for the secondary full text screening. licly available, provided to the patient, or dependent on the
patient’s possession of the technology. Seven of the techno
Study Characteristics logy-based intervention studies provided a device, 7 relied on
The 77 records included in this review spanned over 3 decades a personal device, and 5 displayed the education in a shared
(1989-2021). Studies occurred in 24 different countries, as space (such as projected in a clinic waiting room, classroom,
shown in Fig. 3. Iran (14, 18%), China (12, 16%), and Turkey or conference room). Additionally, of the 31 studies that used
The Oncologist, 2023, Vol. 28, No. 1 5

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Figure 3. Countries represented in the systematic review.

Table 1. Characteristics of studies in systematic review. a technology-based intervention, 23 (77%) were published in
or after 2015.
Characteristics Reviewed studies N = 77, n (%) Other education methods included: 25 (33%) studies with
written materials that either did not have visuals or did not
Publication year (1989-2021)
mention whether visuals were included, 26 (34%) consisted
 Before 2015 30 (39) of lectures or audiotapes, and 20 (26%) used visual pam-
 2015-2021 47 (61) phlets (including posters). Detailed intervention characteris-
Number of countries 24 tics are available in Table 2.
 Low income 6 (8)
 Lower-middle income 14 (18) Setting
 Upper-middle income 57 (74) The setting in which education was provided was also exam-
Type of cancer involved ined. Education was primarily conducted in a clinic setting
 Breasta 25 (43) (53, 72%). Twenty-four studies (31%) included education in
 Gynecologica 13 (22) a group session, while 26 (34%) described individual teaching
 Genitourinary a
6 (10) sessions, conducted in-person or through phone calls. Nurses
were the most common educators in 25 studies (33%), fol-
 Hematologica 2 (3)
lowed by researchers in 11 studies (14%), and doctors in
 Othera, b 12 (21)
9 studies (12%). Twenty-three studies (31%) did not spec-
 Multiple 19 (25) ify who provided the education. Other education providers
Median number of intervention 74 (36, 183) included pharmacists, psychologists, and medical students.
participants (IQR) Eight studies (10%) described more than one provider role
Study design providing education.
 Randomized controlled trial 27 (35)
 Quasi-experimental 34 (44) Frequency and Duration
 Single-arm study 5 (7) Studies were nearly split between educational interventions
 Mixed methods 4 (5) that were offered one-time (n = 41, 56%), and those that
 Qualitative 3 (4) consisted of multiple sessions (n = 32, 44%). The frequen-
cies of multi-session interventions varied greatly, from 2
sessions, to multiple touch points (daily to weekly) over a
Data are presented as n (%).
a
Percentages calculated from studies that studied a single cancer type span of 6 months, to sessions with each cycle of chemo-
(n = 58) therapy. The duration of each educational intervention
b
Other includes Gastrointestinal (5), Head and Neck (3), and Thoracic (1).
also covered a wide range. Of the 58 studies that stated
the duration of the education, 34 (59%) lasted between 30
and 60 min. However, there were some sessions as short as
6 The Oncologist, 2023, Vol. 28, No. 1

Table 2. Characteristics of the educational intervention. 10 min, and others closer to 2 h. Of note, all 6 of the studies
that occurred in low-income countries involved one-time
Intervention characteristics Reviewed studies interventions.
N = 77, n (%)

Education method Other Intervention Characteristics


 Technology based 31 (40) Other intervention characteristics included the intervention’s
 Lectures/audiotapes 26 (34) design; 24 studies (32%) specified they were driven by a theo-
 Visual pamphlet/posters 20 (26) retical framework. While numerous theories were referenced,
 Written materials without visuals mentioned 25 (33) the Health Belief Model, Trans-Theoretical Model, and Self-
 Individual education session/telephone call 26 (34) Efficacy Theory were the most common. Many health behav-
 Group education session 24 (31) ior theories stress the importance of social supports, so data
 Other 17 (22)
were also collected about for whom the intervention was
intended. The education recipient was the patient only in 46
Number of education methods used
studies (60%). Seventeen studies (22%) targeted the patient
 1 20 (26)

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and a family member or spouse. Four studies (5%) targeted
 2 28 (36) family members or a partner without the patient, such as
 3 21 (27) when the intervention was for parents of children with cancer,
 4+ 8 (10) and one study was exclusively for caregivers. Additionally, 12
Type of technology useda studies (16%) were for the general community, such as in
 Video 20 (65) screening interventions.
 Mobile application 4 (13) We also examined whether the intervention provided the
 SMS/text 4 (13) recipient with material to keep and take home with them,
 Other 5 (16) which could include printed pamphlets, DVDs, audiotapes,
Intended audience for educationa
or other materials. The recipient received education mate-
rial as part of the intervention in 49 studies (64%). Looking
 Patient 60 (79)
into this further, 3 low-income studies (50%), 9 lower-mid
 Partner/spouse 12 (16)
dle income studies (64%), and 37 upper-middle income
 Family member 9 (12)
studies (65%) included take-home materials for the recip-
 Community 12 (16) ient. A final category included in the intervention profile
Qualification of education providera was when along the cancer continuum the education was
 Nurse 25 (33) provided. Among the 77 studies, 31 (41%) consisted of a
 Researchers 11 (14) screening or early detection intervention; 4 (5%) occurred
 Doctor 9 (12) at the time of diagnosis; 37 (49%) were provided at some
 Pharmacist 3 (4) point during treatment; and 5 (6%) were after treatment
 Medical students 3 (4) was completed.
 Psychologist 2 (3)
 Other 11 (14) Evaluation Characteristics
 Not mentioned 23 (31) Seventy-four studies (96%) included an evaluative compo-
Stage of cancer continuum nent. Of these, 65 (88%) used quantitative methods, such as
when education provided questionnaires, or pre- and post-surveys. Three studies (4%)
 Screening/early detection 31 (40) used a qualitative evaluation approach, and 6 (8%) used
 Time of diagnosis 4 (5) mixed methods. Additionally, 41 studies (55%) stated using
 During treatment 37 (49) at least one validated tool for their evaluation. The most ref-
 Post-treatment 5 (6)
erenced tools were the European Organization for Research
and Treatment of Cancer Quality of Life Questionnaire,
 Not mentioned 3 (4)
the Hospital Anxiety and Depression Scale, the State-Trait
Patient received take-home educational material 49 (64)
Anxiety Inventory, and the Functional Assessment of Cancer
Intervention was designed based on health theory 24 (32)
Therapy Scale. Altogether, about 30 different tools were used.
Most common health theories used The studies assessed a range of outcomes in their evaluations.
 Health Belief Model 6 (25) Patient knowledge was the leading evaluated outcome in 35
 Trans-Theoretical Model 5 (21) studies (47%). Other outcomes included quality of life, men-
 Self-efficacy Theory 4 (17) tal health (depression, anxiety, etc.), screening uptake, symp-
 Theory of Planned Behavior 2 (8) tom management, patient satisfaction with the intervention,
 Neuman Systems Model 2 (8) self-efficacy, perceptions/attitudes, coping mechanisms, and
 Health Promotion Model 2 (8) reported pain (Table 3).
Population literacy was considered 20 (26) The timing of the evaluations was also collected. Twenty-
Frequency of education
nine studies (40%) included a single evaluation at the imme-
diate end of the intervention. Twenty-eight studies (38%)
 One-time 41 (56)
had a single evaluation but delayed by varying amounts of
 Multiple times 32 (44)
time from the end of the intervention. The remaining 16 stud-
ies (22%) had multiple points of evaluation. The timing of
Data are presented as n (%).
a
Percentage scores may amount to greater than 100% because categories
the evaluations varied greatly for studies that had single or
are not mutually exclusive.
Abbreviation: SMS, short message service.
The Oncologist, 2023, Vol. 28, No. 1 7

Table 3. Evaluation characteristics for studies that included evaluations. Discussion


Characteristics Reviewed studies with
In summary, while the systematic review yielded 77 studies
evaluations, N = 74, n (%)a for inclusion, only 6 articles were from low-income countries.
These numbers show the relative lack of empiric research on
Method used in evaluation oncology-focused educational interventions in LMICs. The
 Quantitative 65 (88) included studies revealed that while technology-based inter-
 Qualitative 3 (4) ventions were the most used, other traditional methods such
 Mixed methods 6 (8) as pamphlets, lectures, and visuals were also prominent. The
studies also showed variations in who provided the education,
Outcomes evaluatedb
with nurses and researchers as the most common. Similar to
 Patient knowledge 35 (47)
the education approaches, the evaluation methods in these
 Quality of life 16 (22) studies were very heterogeneous. The studies evaluated sev-
 Mental health 16 (22) eral outcomes, from patient knowledge to quality of life to
 Screening uptake 15 (20) mental health. Additionally, nearly half of the evaluations did

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 Symptom management (other than 13 (18) not use a validated tool, highlighting a relative lack of rigor
pain) to many of the evaluations.
 Patient satisfaction 12 (16) Of note, during the study screening process, there were
 Self-efficacy 10 (13) many studies that were ineligible for inclusion in the review
 Perceptions/attitudes 9 (12) because, while they reported on the lack of patient knowledge
 Coping mechanisms 6 (8)
of various cancers and highlighted the importance and need
for education, they did not include implementation of an inter-
 Reported pain 5 (7)
vention to improve knowledge. Some of these studies also dis-
 Intent to screen 5 (7) cussed cancer awareness. While awareness is critical to early
 Theoretical constructs c
4 (5) detection, this review focused on oncology-specific education
 Other 4 (5) interventions, and thus excluded studies only about raising
Validated tool used in evaluation 41 (55) awareness. This review suggests that although there is ample
Most common tools used research in LMICs highlighting the need for cancer-related
 EORTC-QOL Questionnaire 10 (24) education and awareness, there is relatively little research on
 HADS 7 (17)
how to provide patient education, or on the impact of edu-
cation on outcomes. This lack of research is especially true
 STAI 3 (7)
among low-income countries, which comprised only 8% of
 FACT d 3 (7) studies in this review.
Timing of evaluation Regardless, this review reveals some trends among the
 One time, at intervention’s end 29 (40) interventions. For example, technology-based interventions
 One time, delayed from intervention’s 28 (38) were the most prevalent education method, with educational
end videos as the most used type of technology. Mobile technol-
 Multiple times 16 (22) ogy has become increasingly prevalent over the past decade,
Intervention’s results with an estimated 5 billion people owning mobile devices
 Outcome improvements 56 (76) as of 2018.29 Although the spread of mobile technology has
 Mixed outcomes 14 (19)
not been equal across all income groups, a recent study in
11 middle-income countries found that the vast majority of
 No baseline assessment 3 (4)
adults had access to mobile technology as of 2019, with over
 No change 1 (1)
50% of their populations having access to a smartphone with
an internet connection.30 Thus, it is not surprising that 77%
a
Data from the 74 studies that included an evaluation. of the technology-based methods were used during or after
b
Percentage scores may amount to greater than 100% because categories 2015. As educational videos continue to become more com-
are not mutually exclusive.
c
Includes perceived benefits, subjective norms, perceived barriers, etc. mon patient education tool, effective methods of creating,
d
Includes disease-specific versions. distributing, and evaluating them should be further studied.
Abbreviations: EORTC, European organization for research and treatment One technology-based education style that has been proven
of cancer; QOL, quality of life; HADS, Hospital anxiety and depression
scale; STAI, State trait anxiety inventory; FACT, Functional assessment of to effectively improve patient knowledge in HICs is through
cancer therapy scale. interactive video computer systems, which allow patients
to engage with information that matches their preferences
and needs.16 Implementation science approaches should be
multiple evaluations at a later point, ranging from 24 h after used to access technology-based interventions and to ensure
the intervention to 12 months later. they are feasible and acceptable in low-resource settings.31
Finally, most of the studies reported positive results of Additionally, leveraging the benefits of technology and other
the impact of the interventions. Fifty-six (76%) of studies modes of community knowledge dissemination, for example
reported outcome improvements and 14 (19%) reported with community health workers has the potential to create
mixed outcomes. Of the 4 other studies, one found no change an even more effective grassroots method for providing mass
and 3 did not have a baseline assessment from which to mea- cancer education.32
sure changes. More detailed evaluation characteristics are Written materials (including educational booklets, pamphlets,
summarized in Table 3. or posters) were also a common source of education seen in these
8 The Oncologist, 2023, Vol. 28, No. 1

studies. However, there was little uniformity in the content and empowered to expand their roles to include patient educa-
style of these materials. For example, only about half of the writ- tion.39,40 Other studies in high-income countries also suggest
ten materials described including a visual component. Research that training nursing specialists or other paramedical staff
has shown that visuals can greatly improve patients’ experience to provide education could improve patient outcomes.41,42
with, and comprehension of, written materials.33 Visuals are Regardless of who plays the educator role, adequate train-
especially impactful for populations with limited literacy, which ing of the educator is paramount. A well-planned program to
are prevalent in LMICs. The World Bank reported an adult liter- train the trainers is feasible and can contribute to sustained
acy rate of 60% in low-income countries, and health literacy is improvement in cancer care in low-resourced settings.43
likely to be much lower.34 Therefore, literacy level should always Future studies of oncology patient education should carefully
be considered when designing written education materials by consider who will provide education to assure the individual
including visuals, using simple language, or other evidence-based is a trusted member of the care team, and that the role is sus-
methods. tainable after the study ends.
About half of the education methods were delivered one Many health behavior theories acknowledge the impor-
-on-one and half were in group sessions. While there is emerg- tance of family and social supports to achieve behavior
ing data from HICs that individual and group approaches change. Multiple studies have shown the protective effects of

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may be equally effective, a combination of approaches are social support on a person’s tendencies to seek out healthcare,
frequently used, taking into account local factors.35,36 Given understand health information, and manage health condi
limited resources in LMICs, additional research into the effi- tions.44-46 Yet, most of the interventions in this study targeted
cacy and feasibility of individual versus group education is only the patient. Future interventions should consider incor-
warranted. There was also a wide variety of professionals porating a family member, friend, or partner in education ses-
who provided the health education. Nurses were the most fre- sions to help enhance the impact of education interventions.
quent educators, but they were used only in 25 (33%) studies. Patient advocates and lay patient navigators could also be
Researchers were the second most common educator (n = 11, leveraged to improve effective patient–doctor communication
14%). Using researchers as educators could be a problem- and patient engagement in decision-making.
atic approach, particularly in cases where the researcher is Comprehensive evaluations of education methods are
external to the primary care team or a foreign partner. These critical to understanding efficacy and implementation out-
researchers may be less familiar with the target patient com- comes, as well as to informing the design future interventions.
munities, and therefore may not be trusted by patients. Trust Although 76% of studies that included an evaluation used a
between the community and an educator is critical to effective pre-test/post-test design, the timing of the evaluation method
education.37 Additionally, the intervention may lack sustain- can vary significantly depending on the desired outcomes. For
ability if the researcher leaves the community after the study example, an evaluation of screening uptake after an interven-
is over. Utilizing foreign researchers as educators may per- tion would have to be delayed from the intervention’s end to
petuate inequities and remnants of colonialism that persist in allow people time to pursue screening. On the other hand, an
global health.38 outcome like patient satisfaction could be assessed immedi-
Moreover, recent studies note that nurses have been his- ately after the intervention. Other outcomes, such as knowl-
torically underused in LMICs and suggest that nurses can be edge, could be assessed immediately after an intervention, but

Table 4. Recommendations for future education interventions and evaluations.

Using community-based participatory research (CBPR) approaches


Researchers should gather input with surveys and interviews of local healthcare providers, patient advocates, and patients to determine opti-
mal intervention characteristics (desired outcomes, trusted educator, etc.) for the targeted community.
Incorporating health behavior theory or frameworks in development of education materials
The intervention should be designed according to an evidence-based theory/framework, such as the Health Belief Model or Trans-Theoretical
Model. Enhancing training of local staff and researchers in behavioral interventions and implementation science principles is important to
ensure sustainability.
Assessing literacy and ensuring pretesting
Education materials must be designed at an appropriate literacy level to increase patient comprehension. Researchers should be knowledgeable
about the target community’s literacy level and pretest the materials with community members to ensure suitability.
Including patient caregivers/advocates in education interventions
Research and health behavior theories show that comprehension of patient education increases when a support person is present. Thus, inclu-
sion of a patient support person during educational intervention is strongly encouraged. Additionally, patient advocates and navigators that
are appropriately trained could be used to promote effective patient-doctor communication and patient decision-making.
Using validated evaluation methods
Evaluations that use a validated tool provide more reliable and reproducible results. There are numerous such tools, including the European
Organization for Research and Treatment of Cancer (EORTC) Quality of Life questionnaire, the Hospital Anxiety and Depression scale, and
the Brief Fatigue Inventory; these tools can be adapted and translated for use within the local context.
Robust reporting of methods and outcomes
Researchers should share detailed reports of their efforts to help increase transferability of knowledge. Published reports should include details
the materials used, and implementation outcomes such as feasibility and acceptability. We also encourage publication of negative studies. This
depth of reporting will increase dissemination and implementation of best practices for patient education interventions.
The Oncologist, 2023, Vol. 28, No. 1 9

with acknowledgment that the results may change if assessed Acknowledgments


again after a period of time. Therefore, the timing of the
We thank the Dana-Farber Center for Global Cancer
evaluation must be tailored depending on the outcome being
Medicine for administrative and financial support of this pub-
measured.
lication. Any opinions, findings, and conclusions expressed in
Although this review did not collect specific data about
this material are those of the author(s) and do not necessarily
cost and cost-effectiveness, it should be noted that very few
reflect those of the American Society of Clinical Oncology,
articles mentioned the costs of their study intervention and
Conquer Cancer or Breast Cancer Research Foundation, or
implementation. Cost-effectiveness analyses of effective
any other funders.
interventions are important to determine which practices
are feasible in low- and middle-income settings. Similarly,
implementation outcomes such as feasibility, acceptability Funding
and appropriateness are important contributors to long-term
T.F. is supported by a 2021 Conquer Cancer Breast Cancer
sustainability for interventions. However, only one study dis-
Research Foundation Career Development Award for
cussed measuring one of these outcomes. Future research
Diversity, Inclusion and Breast Cancer Disparities in honor of
on patient education interventions should discuss how the

Downloaded from https://academic.oup.com/oncolo/article/28/1/2/6767584 by guest on 15 March 2024


Susan Hirschhorn and in memory of her mother, supported
patient education could be incorporated into daily workflow
by Breast Cancer Research Foundation. He is also support-
of the patient care team, and measure the success of imple-
ed by an Early Career Faculty Innovation Grant from Dana-
menting such interventions in order to enhance sustainability
Farber Cancer Institute.
of the practice.
There are several strengths of this review. To our knowl-
edge, this report represents the most comprehensive assess- Conflict of Interest
ment of oncology patient education in LMICs in the literature.
Our comprehensive search strategy, use of PRISMA proce- The authors indicated no financial relationships.
dures, and practice of ensuring concordance between the 2
independent reviewers, highlight the rigor of our approach.
Author Contributions
However, there are some limitations. The included articles
are limited to publications available in English, which intro- Manuscript writing: K.C., T.F. Conception/design, provision
duces a language bias and makes the findings less generaliz- of study material or patients, collection and/or assembly of
able to non-English speaking LMICs. In addition, given the data, data analysis and interpretation, and final approval of
heterogeneity in the type of studies, it was not possible to manuscript: All authors.
meaningfully collate data across studies to draw conclusion
about specific educational approaches. Finally, while most of
the studies reported a positive outcome, there is likely a lit-
Data Availability
erature reporting bias whereby studies with null results may No new data were generated or analyzed in support of this
never get published. research.

Supplementary Material
Conclusion Supplementary material is available at The Oncologist online.
This systematic review sets the stage for the development of
future oncology patient education interventions in LMICs.
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