Development of a Pediatric Palliative Care Curriculum and Dissemination Model: Education in Palliative and
Stefan J Friedrichsdorf1, Stacy Remke2, Joshua Hauser3
1Department 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.
Insights
Education in Palliative and End-of-Life Care (EPEC)-Pediatrics provides comprehensive training in pediatric palliative care (PPC). This program significantly improves clinician knowledge and skills, ultimately enhancing care for seriously ill children globally.
Area of Science:
- Pediatric Palliative Care
- Medical Education
- Symptom Management in Children
Background:
- Seriously ill children often experience severe symptoms and distress.
- Access to specialized pediatric palliative care (PPC) and trained clinicians is limited.
- Inadequate PPC education is a barrier to implementing essential care services.
Purpose of the Study:
- To describe the development and global dissemination of the Education in Palliative and End-of-Life Care (EPEC)-Pediatrics curriculum.
- To enhance primary pediatric palliative care knowledge, attitudes, and skills among healthcare professionals.
- To improve the quality of care for children with serious illnesses.
Main Methods:
- Developed a 24-module EPEC-Pediatrics curriculum funded by NIH/NCI (2010-2017).
- Utilized a blended learning approach: online modules and in-person sessions.
- Implemented a "Train-the-Trainer" model with Professional Development Workshops to create Master Facilitators.
Main Results:
- Trained 867 EPEC-Pediatrics Trainers and 75 Master Facilitators from 58 countries (2012-2019).
- Adapted curriculum for large-scale dissemination in Canada and Latin America, translated to French and Spanish.
- Participants reported significant improvements in PPC knowledge, attitudes, and skills, anticipating enhanced patient care.
Conclusions:
- EPEC-Pediatrics is the most comprehensive PPC curriculum globally.
- The curriculum is adaptable, self-sustaining, and expanding internationally.
- The program effectively equips clinicians to improve care for critically ill children.
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.
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