Pediatric palliative care is intended to optimize the quality of life, promote healing, and provide comfort for patients and their families. Over the past decade, pediatric palliative care (PPC) has become vital to caring for children with life-threatening conditions and many hospitals now have teams that specialize in providing this type of support to their patients and families. The Pediatric Palliative Care Research Network (PPCRN) is an interdisciplinary, multi-center team of researchers and clinicians who are using research to improve the quality of care for children with life-threatening conditions and their families.
About the PPCRN
Members of the PPCRN have distinct research interests that involve various parts of the patient experience. As pediatric palliative care is a relatively new field, there is a great deal of research still ahead of us.
Through regular communication, researchers share their findings and knowledge with others around the country. This network allows researchers to access more patients than are available in any one children’s hospital and enables larger studies to take place in multiple hospitals.
Our mission is to:
- To foster multi-centered collaborative interdisciplinary research
- To advance PPC research questions and methods
- To increase the number of PPC investigators
- To enable an evidenced-based practice of PPC
- To promote a culture of inquiry in collaboration with patients and families in PPC
The PPCRN has completed two multi-center studies at this time:
- Key characteristics of patients and families receiving PPC: Six PPC teams around the country participated in a study to identify key characteristics of patients and families receiving PPC. By observing patients over the course of the year, researchers identified common factors surrounding pediatric palliative care.
- PediQUEST: Patients and parents in this study self-reported various symptoms on a weekly basis, and summaries of these reports went to providers. Researchers discovered that symptoms tended to be relatively high in these patients, but that participants experienced an increase in their emotional well-being by being a part of this study. This initial PediQUEST study proved that this type of research was possible, opening the door for further studies.
Our Leaders and Members
Joanne Wolfe, MD, MPH
Division Chief of Pediatric Palliative Care, Dana-Farber Cancer Institute
Director of Palliative Care, Boston Children’s Hospital
Chris Feudtner, MD, PhD, MPH
Director of the Department of Medical Ethics, Children’s Hospital of Philadelphia
Director of Research for the Pediatric Advance Care Team and the Integrated Care Service Funding
PPCRN Membership Directory of 118 members representing over 75 institutions and eight countries, including the United States, Belgium, England, Canada, Argentina, Australia, Brazil, and Lebanon.
PPCRN is supported by a grant from the U.S. Cancer Pain Relief Committee. Additional projects are being funded by the National Institute of Health.
To learn more about the PPCRN, contact:
Madeline Bilodeau, Project Manager
Department of Psychosocial Oncology and Palliative Care
Dana-Farber Cancer Institute