Abstract
Context: Most children living and dying with serious illnesses experience high burden of distressing symptoms. Many seriously ill children and their families do not have access to subspecialist pediatric palliative care (PPC) services nor to clinicians trained in primary PPC. Lack of PPC education appears to be a significant barrier to PPC implementation. Objectives: Description of the development and dissemination of Education in Palliative and End-of-Life Care (EPEC)-Pediatrics. Methods: Funded through a U.S. $1.6 million National Institutes of Health/National Cancer Institute grant 2010–2017, this 24-module curriculum was designed to teach primary palliative care. The target audience included interprofessional pediatric hematology/oncology providers and all other clinicians caring for seriously ill children. Results: The curriculum is delivered in a combination of online learning and in-person, face-to-face sessions. In addition, a one-day Professional Development Workshop was developed to teach EPEC-Pediatrics graduates, future “Trainers,” thus becoming “Master Facilitators.” Between 2012–May 2019, a total of 867 EPEC-Pediatric Trainers and 75 Master Facilitators from 58 countries participated in 17 Become an EPEC-Pediatrics-Trainer conferences and three Professional Development Workshops. The curriculum has also been adapted for large-scale dissemination across Canada and Latin-America, with translation to French and Spanish. Participants overwhelmingly report improvements in their PPC knowledge, attitudes, and skills, including teaching. Trainers subsequently anticipated improvements in patient care for children with serious illness at their home institutions. Conclusion: EPEC-Pediatrics has developed into the most comprehensive PPC curriculum worldwide. It is highly adaptable for local settings, became self-sustaining and six conferences are offered around the world in 2019.
| Original language | English (US) |
|---|---|
| Pages (from-to) | 707-720.e3 |
| Journal | Journal of Pain and Symptom Management |
| Volume | 58 |
| Issue number | 4 |
| DOIs | |
| State | Published - Oct 2019 |
Funding
Additional funding led to adapting the curriculum for Latin America and Canada, including Spanish and French translations, as well as teaching in several foreign countries. EPEC-Pediatrics LatinoAmerica 40 began with the training of eight South American MFs and an initial Train-the-Trainer conference with 58 participants from seven countries. Another satellite project was funded by the Canadian Partnership Against Cancer in 2014 with CAN$ 950,000 and developed in collaboration with seven Canadian provincial Ministries of Health, Family Advocacy: Childhood Cancer Canada Foundation, Ontario Parents Advocating for Children with Cancer; Pediatric Oncology: Atlantic Provinces Pediatric Hematology/Oncology Network, C17 Council, Canadian Paediatric Brain Tumor Consortium, and the Pediatric Oncology Group of Ontario. The overall project, “Enhancing the Quality of Palliative and End-of-Life Care for Children with Cancer” trained regional teams from 15 Canadian children's hospitals and involved implementation of a quality improvement (QI) project that resulted in training of four Canadian MFs. The 96 participants of two regional conferences trained more than 3500 end-users in all regions of Canada. 41 Countries outside the U.S. in which EPEC-Pediatrics has been taught include: Australia, Austria (which included training clinicians from seven Eastern European countries), Canada (×3), India (×2), Israel (for Palestinian and Israeli clinicians), Malaysia, and New Zealand. Between 2012 and March 2019, there were a total of 867 EPEC-Pediatrics Trainers and 75 MFs from 58 countries representing all six continents ( Fig. 3 ) trained as a result of conducting a total of 17 Train-the-Trainer conferences and three PDWs. In response to the need for more widespread professional training in primary PPC and the gap between basic and advanced training in the prevention and treatment of pain and other distressing symptoms, EPEC-Pediatrics was conceptualized by a core investigator team (Appendix Table 1) and then funded through a $1.6 million NIH/NCI R25 grant. This program was adapted from the adult EPEC program with the pediatric content newly created after an extensive review of existing PPC curricula. 25–31 The adult EPEC program is a leading model for training clinicians in primary palliative care skills,28 and is currently composed of 17 modules, four of them addressing pain and symptom management.32 EPEC and EPEC-Pediatrics are designed to train non-palliative care specialists in basic palliative care competencies, referred to in the literature as “primary palliative care.” 24,33The authors wish to thank the members of the EPEC-Pediatrics Advisory Council, the EPEC Pediatrics Writers, and all EPEC-Pediatrics Master Facilitators. Special thanks to Linda Emanuel as well as Katie McGuire, Lexie Goertzen, Derek Jarvis, Elisa Roman, Veronica Roman, Kim Honcharenko, and Cheryl Puumala for their strong support of EPCE-Pediatrics. Funding from National Institutes of Health (NIH)/National Cancer Institute (NCI) (R25 CA151000). NIH grant #R25 CA151000-01. The authors declare no conflicts of interest. Funding from National Institutes of Health (NIH)/ National Cancer Institute (NCI) ( R25 CA151000 ). NIH grant # R25 CA151000-01 . This section of this article describes the EPEC-Pediatrics program training outcomes for the seven Train-the-Trainer conferences funded through the NIH/NCI grant period 2012–2017, including knowledge, skills, attitudes, and participant evaluations. We also describe current and anticipated post-grant training and program sustainability plans.
Keywords
- Pediatric palliative care
- Train-the-Trainer
- curriculum
- dissemination
- education
- post-graduate teaching
ASJC Scopus subject areas
- Clinical Neurology
- Anesthesiology and Pain Medicine
- General Nursing
