How we approach sharing child–caregiver PRO disagreement

Author:

Porter Amy S.1,Hinds Pamela S.23ORCID,Wiener Lori4ORCID,Thompson Amanda L.5,Weaver Meaghann S.67ORCID

Affiliation:

1. Division of Supportive and Palliative Care Mass General for Children Boston Massachusetts USA

2. Department of Nursing Science, Professional Practice and Quality Children's National Hospital Washington District of Columbia USA

3. Department of Pediatrics The George Washington University Washington District of Columbia USA

4. Pediatric Oncology Branch, Center for Cancer Research National Cancer Institute (NCI) Bethesda Maryland USA

5. Life with Cancer Inova Schar Cancer Institute Fairfax Virginia USA

6. Department of Pediatrics University of Nebraska Omaha Nebraska USA

7. National Center for Ethics in Healthcare, Veterans Affairs Washington District of Columbia USA

Abstract

AbstractResearchers use patient‐reported outcomes (PRO) to capture the patient experience, and in pediatrics, parent report of symptom and function often accompanies the child's assessment. Children with cancer and their family caregivers frequently evaluate symptom burden and functional status differently. Child–caregiver PRO disagreement often worries pediatric oncology clinicians, who do not know how to best approach sharing it with families. Openly discussing differences in symptom and functional status reporting is a crucial element of supporting families and can improve family harmony throughout the child's illness journey. This paper offers strategies and language for communicating with families about PRO disagreement.

Funder

National Cancer Institute

Publisher

Wiley

Subject

Oncology,Hematology,Pediatrics, Perinatology and Child Health

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