Development of a Pediatric Palliative Care Curriculum and Dissemination Model: Education in Palliative and End-of-Life Care (EPEC) Pediatrics

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 2010e2017, 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 2012eMay 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.

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