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

Stefan J Friedrichsdorf; Stacy Remke; Joshua Hauser; Laurie Foster; Andrea Postier; Alison Kolste; Joanne Wolfe

doi:10.1016/j.jpainsymman.2019.06.008

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

J Pain Symptom Manage. 2019 Oct;58(4):707-720.e3. doi: 10.1016/j.jpainsymman.2019.06.008. Epub 2019 Jun 18.

Authors

Stefan J Friedrichsdorf¹, Stacy Remke², Joshua Hauser³, Laurie Foster⁴, Andrea Postier⁵, Alison Kolste⁵, Joanne Wolfe⁶

Affiliations

¹ Department of Pain Medicine, Palliative Care and Integrative Medicine, Children's Hospitals and Clinics of Minnesota, Minneapolis, Minnesota, USA; Department of Pediatrics, University of Minnesota, Minneapolis, Minnesota, USA. Electronic address: Stefan.Friedrichsdorf@childrensMN.org.
² Department of Pain Medicine, Palliative Care and Integrative Medicine, Children's Hospitals and Clinics of Minnesota, Minneapolis, Minnesota, USA; University of Minnesota School of Social Work, St. Paul, Minnesota, USA.
³ Department of Medicine (Palliative Medicine), Northwestern Feinberg School of Medicine, Chicago, Illinois, USA; Jesse Brown VA Medical Center, Chicago, Illinois, USA.
⁴ University of Minnesota School of Public Health, Minneapolis, Minnesota, USA.
⁵ Department of Pain Medicine, Palliative Care and Integrative Medicine, Children's Hospitals and Clinics of Minnesota, Minneapolis, Minnesota, USA.
⁶ Dana-Farber Cancer Institute, Boston, Massachusetts, USA; Boston Children's Hospital, Boston, Massachusetts, USA.

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.

Keywords: Pediatric palliative care; Train-the-Trainer; curriculum; dissemination; education; post-graduate teaching.

Publication types

Research Support, N.I.H., Extramural

MeSH terms

Curriculum*
Education, Medical, Graduate*
Humans
Models, Educational
Palliative Care*
Pediatrics / education*
Program Development*
Terminal Care*

Abstract

Publication types

MeSH terms

Grants and funding