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Received: 5 April 2022

| Revised: 14 June 2022


| Accepted: 24 August 2022

DOI: 10.1002/cam4.5213

RESEARCH ARTICLE

Regional adaptation of the education in palliative and


end-­of-­life Care Pediatrics (EPEC-­Pediatrics) curriculum
in Eurasia

Michael J. McNeil1 | Bella Ehrlich1,2 | Taisiya Yakimkova1 | Huiqi Wang1 |


Volha Mishkova3 | Zhanna Bezler4 | Ella Kumirova5,6,7,8,9 | Arshia Madni1 |
Narine Movsisyan10 | Karen Williams1 | Baglan Baizakova11 | Marina Borisevich3 |
Georgia Chatman1 | Indira Erimbetova12 | Ximena Garcia Quintero1 |
Rodica Golban | Brandi Kirby | Paola Nunez | Radhikesh Ranadive1 |
13 1 1

Nadezhda Sakhar14 | Jason Sonnenfelt1 | Alisa Volkova15 | Daniel Moreira1 |


Stefan J. Friedrichsdorf | Joanne Wolfe | Stacy Remke | Joshua Hauser |
16 17 18 19

Meenakshi Devidas1 | Justin N. Baker1 | Asya Agulnik1


1
St. Jude Children's Research Hospital, Memphis, Tennessee, USA
2
Warren Alpert Medical School of Brown University, Providence, Rhode Island, USA
3
Belarusian Research Center for Pediatric Oncology, Hematology and Immunology, Minsk, Belarus
4
Belarusian Clinical Center of Palliative Care for Children, Minsk, Belarus
5
Dmitry Rogachev National Research Center of Pediatric Hematology, Oncology and Immunology, Moscow, Russia
6
Russian Scientific Center of Roengenology and Radiology, Moscow, Russia
7
Pyrogov Medical University, Moscow, Russia
8
Morozovskaya Children's City Clinical Hospital, Moscow, Russia
9
N.N. Blokhin National Medical Research Center of Oncology, Moscow, Russia
10
Yerevan State Medical University After Mkhitar Heratsi, Yerevan, Armenia
11
George Washington University, The Milken Institute School of Public Health, Washington, District of Columbia, USA
12
The Republican Center for Hematology and Blood Transfusion, Tashkent, Uzbekistan
13
Institute of Oncology of Republic of Moldova, Moldova, Chisinau
14
Republican Scientific and Practical Center for Pediatric Surgery, Minsk, Belarus
15
Raisa Gorbacheva Memorial Research Institute for Pediatric Oncology, Hematology and Transplantation, St. Petersburg, Russia
16
Benioff Children's Hospitals, University of California San Francisco, San Francisco, California, USA
17
Dana Farber Cancer Institute, Boston, Massachusetts, USA
18
University of Minnesota, Minneapolis, Minnesota, USA
19
Northwestern University, Chicago, Illinois, USA

Justin N. Baker and Asya Agulnik are Co-­Senior Authors

This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided
the original work is properly cited.
© 2022 The Authors. Cancer Medicine published by John Wiley & Sons Ltd.

Cancer Medicine. 2023;12:3657–3669.  wileyonlinelibrary.com/journal/cam4 | 3657


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20457634, 2023, 3, Downloaded from https://onlinelibrary.wiley.com/doi/10.1002/cam4.5213 by Cochrane Colombia, Wiley Online Library on [21/06/2024]. See the Terms and Conditions (https://onlinelibrary.wiley.com/terms-and-conditions) on Wiley Online Library for rules of use; OA articles are governed by the applicable Creative Commons License
3658    MCNEIL et al.

Correspondence
Justin N. Baker, Division of Quality Abstract
of Life and Palliative Care, 262 Danny Background: Pediatric palliative care (PPC) is a priority to improve pediatric
Thomas Place MS260, Memphis,
hematology oncology (PHO) care in Eurasia. However, there are limited regional
TN 38105, USA.
Email: justin.baker@stjude.org opportunities for PPC education. We describe the adaptation and implementa-
tion of a bilingual end-­user Education in Palliative and End-­of-­Life Care (EPEC)-­
Funding information
American Lebanese Syrian Associated
Pediatrics course for PHO clinicians in Eurasia.
Charities Methods: Due to COVID-­19, this course was delivered virtually, consisting of pre-
recorded, asynchronous lectures, and a bilingual workshop with interactive lectures
and small group sessions. A pre–­postcourse design was used to evaluate the knowl-
edge acquisition of the participants including their knowledge alignment with World
Health Organization (WHO) guidance, ideal timing of palliative care, and comfort in
providing palliative care to their patients. Questions were mostly quantitative with
multiple choice or Likert scale options, supplemented by free-­text responses.
Results: A total of 44 (76%) participants from 14 countries completed all compo-
nents of the course including pre-­and postcourse assessments. Participant align-
ment with WHO guidance improved from 75% in the pre-­to 90% in the postcourse
assessments (p < 0.001). After participation, 93% felt more confident controlling the
suffering of children at the end of life, 91% felt more confident in prescribing opioids
and managing pain, and 98% better understood how to hold difficult conversations
with patients and families. Most participants (98%) stated that they will change their
clinical practice based on the skills and knowledge gained in this course.
Conclusions: We present a successful regional adaptation of the EPEC-­Pediatrics
curriculum, including novel delivery of course content via a virtual bilingual for-
mat. This course resulted in significant improvement in participant attitudes and
knowledge of PPC along with an understanding of the ideal timing of palliative
care consultation and comfort in providing PPC to children with cancer. We plan to
incorporate participant feedback to improve the course and repeat it annually to im-
prove access to high-­quality palliative care education for PHO clinicians in Eurasia.

KEYWORDS
education, Eurasia, pediatric oncology, pediatric palliative care

1 | I N T RO DU CT ION symptom management, quality of life, communication,


and reduce patient and caregiver suffering.13–­15
The World Health Organization (WHO) defines palliative While there are structural barriers to PPC delivery in
care as the prevention and relief of physical, developmen- resource-­constrained settings, lack of formal education in
tal, psychosocial, and spiritual suffering of patients and PPC remains a significant challenge.16–­18 A potential in-
their families facing life-­threatening illness.1 Early inte- tervention is the Education in Palliative and End-­of-­life
gration of palliative care is recognized by the WHO as an Care (EPEC)-­Pediatrics curriculum, a 24-­module course
“ethical responsibility” for children with life-­threatening addressing principles of PPC including pain and symp-
illness regardless of resource constraints.2,3 Worldwide, tom management, grief and bereavement, and commu-
more than 21 million children would benefit from pediat- nication, delivered via a combined online-­and in-­person
ric palliative care (PPC) services,4 however, access to PPC training. In addition to PPC content, adult learning the-
is limited, especially in low-­and middle-­income countries ory is included for participants to become “Trainers” and
(LMICs).5–­7 Children with cancer are a unique patient disseminate course content to colleagues.19–­24 Since 2012,
population who experience high symptom burden result- 1517 clinicians from 100 countries/territories from all
ing in poor quality of life.8–­12 Early integration of PPC six continents have participated in this curriculum, and
into childhood cancer care has been shown to improve 1027 became EPEC-­Pediatric “Trainers.” The curriculum
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MCNEIL et al.    3659

has been adapted for large-­scale dissemination in Canada supplemented with input from the EurADO supportive
and Latin America with translation to French and care working group including regional experts in pediatric
Spanish.19–­22 In addition to “Train-­the-­Trainer” courses, oncology, hospice and palliative medicine, pain medicine,
EPEC-­ Pediatrics also offers “End-­ User” courses which and medical education.28,29 The specific course learning
teach principles of PPC to a multidisciplinary audience to objectives were to (1) understand the elements of pallia-
improve direct clinical care. tive care and recognize its importance in childhood can-
The Eurasian Regional Program, or EurADO (Eurasian cer care, (2) become proficient in practical applications of
Alliance in Pediatric Oncology), is a collaboration be- pain and symptom management, (3) gain skills in effective
tween St. Jude Children's Research Hospital and pediatric communication with patients and families, and (4) iden-
hematology-­oncology centers, foundations, and clinicians tify tools for self-­care. The EurADO working group evalu-
in 15 countries in Central Asia and Eastern Europe to im- ated ADAPT data and EPEC-­Pediatrics content to identify
prove care for children with cancer in Eurasia.25 In 2017, 10 modules as high-­yield topics for the region (Table S1).
EurADO identified palliative care as a regional priority.26,27 Additionally, these 10 modules were adjusted to account
To study barriers to palliative care integration, EurADO for the unique cultural context of the region by regional
conducted the “Assessing Doctors' Attitudes on Palliative palliative care experts. For example, some medications
Treatment” (ADAPT) study in 11 Eurasian countries. were added or omitted based on availability in the region,
Identified barriers included delayed integration of PPC or sensitivity to cultural views of discussion of prognosis
into pediatric oncology practice, low access to home-­based with the child was considered in developing the material.
PPC services, and misalignment of physician knowledge
with WHO guidance.28,29 This misalignment included
considering palliative care as synonymous with end-­of-­life 2.3 | Course delivery
care, concerns that involvement of PPC in patient care in-
creased parental anxiety, and lack of comfort addressing The 10 EPEC-­Pediatrics modules were recorded as didactic
physical and emotional symptoms of children with cancer. lectures by three palliative care experts from St. Jude (MM,
Subsequently, a virtual EPEC-­Pediatrics end-­user course JB, and KW); slides and voice-­over audio were then trans-
was developed to teach PPC principles to Eurasian clini- lated into Russian (TY and VM). The course was composed
cians emphasizing gaps identified by the ADAPT study of 3 weeks of online content (15 total hours, March 1–­March
supplemented with a participant needs assessment. 19, 2021) via Cure4Kids, a free web-­based distance-­learning
The objective of this report is to describe the impact of platform with an integrated learning management system.30
the adapted EPEC-­Pediatrics course on participant knowl- A subsequent 5-­day synchronous virtual workshop (10 total
edge of PPC including alignment with WHO guidance, hours, March 22–­26, 2021) using the videoconferencing
understanding of standard components of palliative care, platform Zoom (See Table S2).31 Each workshop day was
ideal versus actual timing of palliative care, and comfort composed of 1 h of interactive didactic lecture led by a pal-
level in providing palliative care in the clinical setting. liative care expert with simultaneous translation followed
Additionally, we assessed the effectiveness and feasibility by the second hour of small group practical sessions of
of a novel bilingual virtual course format. skill-­development activities led by EPEC-­Pediatrics-­trained
Eurasian facilitators in Russian or English. An English-­
speaking EPEC-­Pediatrics expert co-­facilitator assisted the
2 | M ET H ODS small group with simultaneous translation to allow for bi-
directional discussion. Examples of the skill-­development
2.1 | IRB approval activities included a case-­based experience teaching the
principles of dyspnea, role play for communication, and
This study was approved by the Institutional Review wellness exercises during the self-­care small group sessions.
Board at St. Jude Children's Research Hospital as cat-
egory 2 exempted research including educational tests
and survey procedures [SJ-­EPECPEDS (FWA00004775)]. 2.4 | Course participants
Participation in the course resulted in implied consent.
Course participants were physicians, nurses, and psy-
chologists who care for children with cancer recruited
2.2 | Course design from Eurasian institutions that collaborate with the
St. Jude Global Eurasian Regional Program25 or the World
The EPEC-­Pediatrics Eurasia course was developed Health Organization Global Initiative in Childhood
based on findings from the Eurasian ADAPT study Cancer (WHO GICC).32 Letters of invitation were sent to
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20457634, 2023, 3, Downloaded from https://onlinelibrary.wiley.com/doi/10.1002/cam4.5213 by Cochrane Colombia, Wiley Online Library on [21/06/2024]. See the Terms and Conditions (https://onlinelibrary.wiley.com/terms-and-conditions) on Wiley Online Library for rules of use; OA articles are governed by the applicable Creative Commons License
3660    MCNEIL et al.

collaborating regional leaders who distributed the invita- Symmetry test. As in the ADAPT study, the 5-­point Likert
tion for participation in the course to their colleagues. scale was collapsed into two categories (disagree and agree)
to compare the pre-­and postresults of the 15 statements
assessing alignment to WHO guidance, with the neutral
2.5 | Survey development response categorized as not in alignment.28 Each partici-
pant's percent alignment to WHO guidance was then cal-
We used a pre–­postassessment design to evaluate the par- culated as the number of statements in alignment out of 15
ticipant experience .33 Assessment items were developed total, and the mean percent alignment was calculated for
based on the ADAPT survey.28,29 The precourse assessment the pre-­and postcourse assessments. McNemar's test was
included demographics and questions assessing alignment used for multiple-­choice questions assessing the timing of
with WHO guidance1.through 15 statements that agreed palliative care consultation. The symmetry test was used
or disagreed with WHO guidelines.28 Additional sections to compare comfort levels in providing palliative care pre-­
assessed understanding of standard accepted components and posttest; delta change was calculated by the difference
of palliative care, ideal versus actual timing of palliative between posttest and pretest means. SAS software, version
care consultation, and comfort in providing palliative 9.4 was used for all quantitative analyses36 and a p-­value
care to their patients (see Figure S1). The assessment was of <0.05 was considered statistically significant. The free-­
developed in English, translated to Russian, reviewed by text responses were translated to English from Russian by
regional experts, and back-­translated to ensure construct a bilingual native speaker (BE). Due to the concise nature
consistency.34 The postcourse assessment included similar of free-­text responses, thematic content analysis was con-
questions to the precourse assessment with the addition ducted by one author (MJM). Responses were organized
of questions evaluating participant confidence in deliver- according to the presence of specific concepts that were
ing components of palliative care after the course and an subsequently grouped into themes for content analysis.
overall course evaluation (see Figure S2). Both assessments
were mostly quantitative with multiple-­choice or Likert-­
scale options, supplemented by several free-­text questions 3 | RESULTS
(See Table S3 for Course Conceptual Framework). The as-
sessments were distributed using the Qualtrics electronic 3.1 | Participant demographics
platform,35 with the precourse assessment in February
2021 and the postcourse assessment in April 2021. Seventy clinicians from 23 institutions in 14 countries ap-
plied to the course, with 58 ultimately enrolling and 47
submitting all course components (see Table S4 for demo-
2.6 | Statistical analysis graphics of participants who did not complete the course).
Three participants had incomplete pre-­or postcourse as-
Descriptive statistics were used to summarize partici- sessments so 44 (75.9%) participants were used for final
pant demographics. Differences in pre-­and postassess- analysis (Figure 1). Most were pediatric hematologists/
ment samples were identified using McNemar's test and oncologists (63.6%); few reported previous palliative care

F I G U R E 1 Participating countries
from Eurasia: Participating countries with
a darker color associated with a larger
number of participants per country.
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MCNEIL et al.    3661

TABLE 1 Participant demographics


training (15.9%) and most did not have access to PPC con-
sultation at their institution (63.6%). Most participants (n = 44),
(86.4%) had at least one patient die, with over a third Demographics overall sample No. (%)
(36.4%) having more than five patients die in their care Country
within the previous year (Table 1). Almost half (45.4%) of Armenia 1 (2.3)
participants felt burdened by their inability to control the Azerbaijan 1 (2.3)
suffering of children at the end of life, 20.5% felt burned
Belarus 5 (11.4)
out by their work, and 15.9% felt more callous toward peo-
Kazakhstan 5 (11.4)
ple since starting their current work (Table 1).
Moldova 2 (4.5)
Poland 1 (2.3)
3.2 | Alignment with WHO Romania 6 (13.6)
Russia 8 (18.2)
The mean participant alignment with WHO guidance prior Serbia 2 (4.5)
to the workshop was 74.5% (range 25.0%–­97.7%, standard Tajikistan 2 (4.5)
deviation 22.1%) which improved postcourse to a mean Ukraine 6 (13.6)
alignment of 90.3% (range 52.3%–­100.0%, standard devia-
Uzbekistan 5 (11.4)
tion [SD] of 12.1%, p < 0.01). Of the 15 WHO statements,
Age
8 had a statistically significant improvement between the
pre-­and postcourse assessments; the remaining 7 had <35 17 (38.6)
precourse WHO alignment of over 89.6% (Table 2). The 35–­50 21 (47.7)
individual median improvement for alignment was 15.9 51–­65 6 (13.6)
percentage points (range: 2.2–­40.9%). The four most com- >65 0
mon precourse misconceptions were (1) it is difficult to Sex
know when a patient with cancer would most benefit from Female 36 (81.8)
meeting the palliative care team, (2) palliative care is syn- Male 8 (18.2)
onymous with “end-­of-­life” care, (3) palliative care for chil-
Primary medical specialty
dren with cancer can be delivered by healthcare workers of
Pediatric hematology and/or oncology 28 (63.6)
all disciplines, not only by palliative care specialists and (4)
early consultation with palliative care causes increased pa- Pediatric anesthesia/ intensive care 5 (11.4)
rental burden and anxiety. Participant scores improved by Pediatric palliative care 3 (6.8)
at least a 20-­percentage points in the postcourse evaluation. General pediatrician 1 (2.3)
a
Other: (please specify) 7 (15.9)
Primary institution
3.3 | Components and timing of Children's Hospital 23 (52.3)
palliative care Cancer Hospital 19 (43.2)
Children's Hospice 1 (2.3)
Participants also broadened their description of the com- b
Other: (please describe) 1 (2.3)
ponents of palliative care for children with cancer pre-­
and postcourse (Figure 2A). Approximately 50% or less Years of experience
of respondents identified certain components as a part 0–­10 years 18 (40.9)
of palliative care in the precourse assessments, which ≥11 years 26 (59.1)
were significantly higher after the course, including spir- Previous training in palliative care
itual support to the patient and family (50.0% vs. 88.6%, No 37 (84.1)
p < 0.01), aid in family decision-­making around treatment Yes 7 (15.9)
options (47.7% vs. 77.3%, p < 0.01), and help clarify goals of
Access to palliative care consultation
care for the patient and family (45.5% vs. 70.5%, p < 0.01).
No 28 (63.6)
When asked about the ideal timing of palliative care
Yes 16 (36.4)
consultation for a child with cancer assuming unlimited
resources, more participants felt palliative care should be I have felt burdened by my inability to control the suffering of
children at the end of life
involved from diagnosis (79.5%) in the postcourse com-
pared with the precourse assessment (34.1%, p < 0.01,
Figure 2B). Additionally, in the postcourse assessment (Continues)
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3662    MCNEIL et al.

TABLE 1 (Continued) TABLE 1 (Continued)

(n = 44), (n = 44),
Demographics overall sample No. (%) Demographics overall sample No. (%)
Disagree 5 (11.4) General pediatrician 1 (2.3)
a
Sometimes 19 (43.2) Other (please specify) 7 (15.9)
Agree 20 (45.4) Primary institution
I feel burned out by my work Children's Hospital 23 (52.3)
Disagree 12 (27.3) Cancer Hospital 19 (43.2)
Sometimes 23 (53.3) Children's Hospice 1 (2.3)
Agree 9 (20.5) Other (please describe)b 1 (2.3)
I have become more callous toward people since I took this job Years of experience
Disagree 25 (56.8) 0–­10 years 18 (40.9)
Sometimes 12 (27.3) ≥11 years 26 (59.1)
Agree 7 (15.9) Previous training in palliative care
How many pediatric patients in your care (<18 years old) died No 37 (84.1)
in the last 12 months? Yes 7 (15.9)
0 patients 6 (13.6) Access to palliative care consultation
1–­5 patients 22 (50.0) No 28 (63.6)
≥6 patients 16 (36.4) Yes 16 (36.4)
(n = 44), I have felt burdened by my inability to control the suffering of
Demographics overall sample No. (%) children at the end of life
Country Disagree 5 (11.4)
Armenia 1 (2.3) Sometimes 19 (43.2)
Azerbaijan 1 (2.3) Agree 20 (45.4)
Belarus 5 (11.4) I feel burned out by my work
Kazakhstan 5 (11.4) Disagree 12 (27.3)
Moldova 2 (4.5) Sometimes 23 (53.3)
Poland 1 (2.3) Agree 9 (20.5)
Romania 6 (13.6) I have become more callous toward people since I took this job
Russia 8 (18.2) Disagree 25 (56.8)
Serbia 2 (4.5) Sometimes 12 (27.3)
Tajikistan 2 (4.5) Agree 7 (15.9)
Ukraine 6 (13.6) How many pediatric patients in your care (less than 18 years
old) died in the last 12 months?
Uzbekistan 5 (11.4)
0 patients 6 (13.6)
Age
1–­5 patients 22 (50.0)
<35 17 (38.6)
≥6 patients 16 (36.4)
35–­50 21 (47.7)
51–­65 6 (13.6) aOther specialties: Nurses, psychologists.
bOther institution: General Hospital.
>65 0
Sex
Female 36 (81.8) fewer participants stated that the ideal timing for consul-
Male 8 (18.2) tation was at the time of complex or high symptoms com-
pared with the precourse assessment (70.5% vs. 47.7%,
Primary medical specialty
p < 0.01).
Pediatric hematology and/or oncology 28 (63.6)
When asked to provide examples of something they
Pediatric anesthesia/ intensive care 5 (11.4)
will do differently in the future, many participants em-
Pediatric palliative care 3 (6.8) phasized the importance of implementing palliative care
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MCNEIL et al.    3663

TABLE 2 Percent change in alignment with WHO guidance before and after EPEC pediatrics course

Statements Pre (N = 44) Post (N = 44) Delta between Post and Pre p value
It is difficult to know when a patient with cancer would most benefit from meeting the palliative care team (collapsed
neutral into agree)
Disagreea 17 (38.6) 35 (79.5) 40.9 <0.001*
Agree 27 (61.4) 9 (20.5)
Palliative care is synonymous with “end-­of-­life” care (collapsed neutral into agree)
Disagreea 23 (52.3) 37 (84.1) 31.8 <0.001*
Agree 21 (47.7) 7 (15.9)
Palliative care for children with cancer can be delivered by healthcare workers of all disciplines, not only by palliative
care specialists (collapsed neutral into disagree)
Disagree 19 (43.2) 6 (13.6) 0.002*
a
Agree 25 (56.8) 38 (86.4) 29.6
Early consultation with palliative care causes increased parental burden and anxiety (collapsed neutral into agree)
a
Disagree 11 (25.0) 23 (52.3) 27.3 0.005*
Agree 33 (75.0) 21 (47.7)
Palliative care is incompatible with curative care (collapsed neutral into agree)
Disagreea 32 (72.7) 43 (97.7) 25 0.002*
Agree 12 (27.3) 1 (2.3)
Involving palliative care suggests the oncologist has failed in the mission to cure the patient (collapsed neutral into
agree)
Disagreea 34 (77.3) 42 (95.5) 18.2 0.01*
Agree 10 (22.7) 2 (4.5)
Involving the palliative care team early has negative effects on the relationship between the oncologist and the patient
and family (collapsed neutral into agree)
Disagreea 34 (77.3) 41 (93.2) 15.9 0.03*
Agree 10 (22.7) 3 (6.8)
Palliative care is appropriate at any stage of treatment in a child with high-­risk cancer (collapsed neutral into disagree)
Disagree 12 (27.3) 5 (11.4) 0.07*
a
Agree 32 (72.7) 39 (88.6) 15.9
Palliative care can be integrated with disease-­directed therapy (collapsed neutral into disagree)
Disagree 6 (13.6) 2 (4.5) 0.15*
a
Agree 38 (86.4) 42 (95.5) 9.1
Involvement of palliative care undermines the role of the pediatric oncologist as the physician in charge of patient care
(collapsed neutral into agree)
Disagreea 40 (90.9) 44 (100.0) 9.1 0.045*
Agree 4 (9.1) 0
Early integration of palliative care for all children diagnosed with cancer would decrease patient suffering (collapsed
neutral into disagree)
Disagree 3 (6.8) 0 0.08*
Agreea 41 (93.2) 44 (100.0) 6.8
Early integration of pediatric palliative care with cancer care would improve interdisciplinary communication (collapsed
neutral into disagree)
Disagree 4 (9.1) 2 (4.5) 0.41*
Agreea 40 (90.9) 42 (95.5) 4.6

(Continues)
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3664    MCNEIL et al.

TABLE 2 (Continued)

Statements Pre (N = 44) Post (N = 44) Delta between Post and Pre p value
Children with cancer who receive palliative care die earlier than those who do not (collapsed neutral into agree)
Disagreea 41 (93.2) 43 (97.7) 4.5 0.32*
Agree 3 (6.8) 1 (2.3)
Children with advanced and incurable cancer often suffer at the end of life (collapsed neutral into disagree)
Disagree 3 (6.8) 3 (6.8) 1.00*
Agreea 41 (93.2) 41 (93.2) 0
Involvement of palliative care during cancer therapy gives greater attention to the quality ofss life and symptom
management (e.g., pain, constipation, dyspnea, fatigue) (collapsed neutral into disagree)
Disagree 1 (2.3) 2 (4.5) 0.56*
a
Agree 43 (97.7) 42 (95.5) −2.2
a
Correct response. Collapsed into two categories (collapse neutral into incorrect response based on whether agree or disagree is the correct answer or not):
Statements organized from the largest positive delta change toward alignment to WHO guidance answer to the lowest delta change toward WHO guidance.
*McNemar's Test.

earlier in the patient's care: “For me, the statement that the them, but I understand that I need to learn to love myself
involvement of a palliative team is possible at the time of and devote more time to my family.” (Belarus) (Table S5).
diagnosis was a discovery. I agree that talking with parents
about palliative care early will facilitate communication at
different stages of the disease. I am going to inform doc- 3.5 | Course assessment
tors about this, to spread the necessary information about
palliative for parents. It's not easy, because the mentality All participants reported the course provided them with new
and attitude towards the very word ‘palliative’ is not very skills relevant to their clinical practice, and 97.7% stated that
simple in our country, and the ‘doctor-­patient’ communi- they will change their clinical practice based on knowledge
cation is very upsetting” (Ukraine) (Table S5). gained in the course. Finally, 95.5% of participants stated
that the course met or exceeded expectations (Table 3).
In free-­text responses, several participants described
3.4 | Comfort and confidence in plans to apply the pain and symptom management, psy-
providing palliative care to patients chosocial support, and communication skills gained during
the course (Table S5). When asked what they enjoyed most
In the precourse assessment, 59.1% of participants re- about the course, some participants described specific lec-
ported feeling comfortable assessing and treating the tures or small group skill-­development sessions. The most
physical needs of pediatric patients with serious incurable common theme, however, focused on the unique struc-
illness, which increased to 75.0% after the course (p = 0.03) ture of the course and the benefit of the small-­group skill-­
(Table S6). While not statistically significant, there were development activities where participants were able to learn
improvements in the postcourse comfort in addressing the from content experts and from each other: “I liked the possi-
emotional needs of patients (72.7% pretest, 86.4% posttest, bility of hearing all the voices, with less or more experience,
p = 0.2) and in addressing the grief and bereavement of and the fact that there was no bad answer” (Romania).
families (43.2% pretest, 68.2% posttest, p = 0.7). Suggestions to improve the course included using
After participating in the course, most participants felt more case examples, increasing time for discussion, and
more confident in their ability to control the suffering of allowing more interaction with other participants. Other
children at the end-­of-­life (93.2%) and to prescribe opi- participants were hopeful that this course could be held
oids and manage pain (90.9%); they also better understood in-­person in the future.
possible solutions to providing palliative care for children
with cancer (97.7%) and how to hold difficult conversations
with patients and families (97.7%) (Table 3). In free-­text 4 | DISC USSION
responses, many participants described the importance of
self-­care and the prevention of burnout as key takeaways The benefits of early integration of palliative care in the
from the course; “I have been working in oncology for management of children with life-­ threatening condi-
28 years. I keep in touch with many already cured patients, tions have been widely described, especially in children
as well as with the parents of children who have died. I value with cancer.9–­12,37 However, significant barriers to early
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MCNEIL et al.    3665

(A) 100.00%
**
**
**

80.00% **
**
Percent of Respondents

60.00%

40.00%

20.00%

0.00%
Clarify the goals of Aid in family Spiritual support Communicate bad Communication Transitions to Reducing pain and Psychological
care decision-making news between the patient/ hospice or home at suffering support
family and medical end-of-life
team

Pre Post
(B)
90.0%

**
80.0%
**
**
70.0%

60.0%
Percent of Respondents

50.0%

40.0%

30.0%

20.0%

10.0%

0.0%
At the me of cancer At the me of cancer At the me of At the me of When there are no At the end of life Palliave care
diagnosis for all diagnosis for disease relapse or complex or high longer curave consultaon is never
paents paents at high-risk progression symptom burden therapeuc opons necessary in
of relapse or (pain, suffering) available pediatric cancer care
progression

Pre Post

F I G U R E 2 (A) Changes in Participation Perception of Palliative Care Role After EPEC Pediatrics Course: Results of pre-­and postcourse
assessments of participant descriptions of the role of palliative care for children with cancer. The precourse survey results are in blue
and the postcourse survey results are in orange. Statistically significant changes in responses occurred for those roles discussing goals of
care, communication, and decision-­making among others (p < 0.05). (B) Changes in Ideal Timing of Palliative Care After EPEC Pediatrics
Course: Ideal timing of initial palliative care consultation for participants in both the precourse survey and postcourse survey responses.
Respondents were instructed to choose all options that applied. The figure shows the percentage of physicians who indicated each option
and the statistically significant difference between the two groups. Comparing the earliest selected timing option (converted to a numeric
scale), physicians indicated that the ideal timing for an initial palliative care consultation for a child.
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3666    MCNEIL et al.

T A B L E 3 Percent confidence in patient care after participation


reported feeling less burdened by their work.28,29 Similarly,
in EPEC pediatrics course
course participants nearly unanimously reported improve-
Postcourse survey ment in their self-­perceived ability to control the suffering
I feel more confident in my knowledge of opioid prescription of children under their care, provide integrated palliative
and pain management for children with cancer care, and conduct difficult conversations. These findings
Disagree 1 (2.3) have important potential implications for addressing the
Neutral 3 (6.8) highly prevalent and urgent issue of burnout and com-
passion fatigue among clinicians caring for children with
Agree 40 (90.9)
cancer –­especially during the COVID19 pandemic as
I feel more confident in my ability to control the suffering of
healthcare professionals are strained by increasing work-
children at the end of life
load and uncertainty from the ongoing pandemic.40–­42
Disagree 0
Our successful experience may be used to guide future
Neutral 3 (6.8)
regional adaptation of the EPEC-­Pediatrics curriculum to
Agree 41 (93.2) improve clinician knowledge and engage collaboration in
I better understand possible solutions on how to provide better PPC globally.43,44 Additionally, this method can inform the
palliative care for children with cancer design and structure of future courses.21
Disagree 0 Due to the ongoing COVID-­19 pandemic, this course
Neutral 1 (2.3) was delivered virtually, including a novel bilingual asyn-
Agree 43 (97.7) chronous/synchronous format using an education plat-
I better understand how to hold difficult conversations with form (Cure4Kids). Several key features led to the success
patients and their families and participate in decision-­ of this course. First, the curriculum was based on data
making and planning for the end of life from recent research identifying regional knowledge
Disagree 0 gaps28 with additional input from regional experts who
Neutral 1 (2.3) understand the local context. In addition, expert regional
Agree 43 (97.7) bilingual facilitators allowed for contextually appropriate
delivery of course content. Second, the unique bilingual
The course provided me with new knowledge and skills that are
relevant to my clinical practice asynchronous/synchronous format allowed participants
to review course materials at their individual pace and
Disagree 0
simultaneous translation of live sessions allowed for real-­
Neutral 0
time discussion between English and Russian speakers.
Agree 44 (100.0)
This ensured a better understanding of course content and
The course provided me with knowledge and skills that will encouraged the participation of all individuals, regardless
CHANGE my clinical practice
of language skills, in the small-­group skill-­development
Disagree 0 activities. This bilingual format was successful in fostering
Neutral 1 (2.3) a rich learning environment as demonstrated by partici-
Agree 43 (97.7) pants highlighting the small group sessions and opportu-
In terms of your expectations, the course was nities to learn from each other in their course evaluation.
Below expectations 2 (4.5) While other virtual training in palliative care have been
Met expectations 16 (36.4) developed,45,46 our experience shows that this bilingual
format is feasible and effective among diverse and geo-
Above expectations 26 (59.1)
graphically separate participants. The virtual format is
also notably more cost-­effective, with decreased travel and
integration of PPC exist, especially in LMICs.16,18,38,39 The lodging needs.
current paper describes a successful approach to address This work has several limitations. Only 75.9% of en-
some of these barriers through the implementation of a rolled participants completed both pre-­and postcourse
novel bilingual virtual end-­user course. Following this assessments, preventing us from evaluating the knowl-
course, participants demonstrated improvement in un- edge acquisition of all participants. However, we wanted
derstanding of ideal timing of palliative care integration, to accurately assess the impact of the entire course, and
alignment with WHO guidance, use of multimodal anal- therefore, felt it appropriate to exclude those that did
gesia, and confidence in communication and self-­care. not complete all the course materials. Additionally, we
Earlier studies by our research team demonstrated physi- do not evaluate improvements in clinical outcomes but
cians with previous training in PPC felt more comfortable rather self-­perceived improvement in clinician knowl-
addressing the palliative care needs of their patients and edge and confidence/comfort. Due to the limitation in
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MCNEIL et al.    3667

capturing the clinical impact of improvement in knowl- ORCID


edge, this is a common strategy employed in educational Michael J. McNeil https://orcid.
research.47,48 Furthermore, the findings represented org/0000-0001-8817-1995
here relate to a single follow-­up timepoint. Additional Huiqi Wang https://orcid.org/0000-0002-7599-7349
monitoring and educational sessions will be needed to Volha Mishkova https://orcid.org/0000-0001-6566-3137
confirm the sustainability of identified improvements Narine Movsisyan https://orcid.
over time. Nevertheless, our unique training experience org/0000-0002-0258-9002
will be essential for building knowledge and expertise Ximena Garcia Quintero https://orcid.
related to pediatric palliative care globally and to inform org/0000-0003-1416-544X
future educational initiatives. Daniel Moreira https://orcid.org/0000-0003-4082-156X
The EPEC-­Pediatrics Eurasia course demonstrated that Asya Agulnik https://orcid.org/0000-0001-8932-8181
regional adaptation of the EPEC-­Pediatrics curriculum to
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