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Cancer Medicine - 2022 - McNeil - Regional adaptation of the education in palliative and end‐of‐life Care Pediatrics
Cancer Medicine - 2022 - McNeil - Regional adaptation of the education in palliative and end‐of‐life Care Pediatrics
DOI: 10.1002/cam4.5213
RESEARCH ARTICLE
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© 2022 The Authors. Cancer Medicine published by John Wiley & Sons Ltd.
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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
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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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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
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3662 MCNEIL et al.
(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.
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MCNEIL et al. 3667
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3668 MCNEIL et al.
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