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Pediatric Palliative Care Research Network (PPCRN)

  • PPCRN logo

    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

    Research Projects

    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

    PPCRN Founders

    Joanne Wolfe, MD, MPH

    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

    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

     

    View the  PPCRN Membership Directory of more than 40 national and international researchers and clinicians.

    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.

    Contact Us

    To learn more about the PPCRN, contact:

    Madeline Bilodeau, Project Manager
    Department of Psychosocial Oncology and Palliative Care
    Dana-Farber Cancer Institute
    617-632-3248
    madeline_bilodeau@dfci.harvard.edu