Relationship Between Parental Distress and Proxy Symptom Reports in Pediatric Palliative Care

Douglas L. Hill, Justin Ingerman Center for Palliative Care (D.L.H., R.T.N., C.F.), The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA.
Russell T. Nye, Justin Ingerman Center for Palliative Care (D.L.H., R.T.N., C.F.), The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA; Department of Biomedical and Health Informatics (R.T.N.), The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA.
Jackelyn Y. Boyden, Department of Family and Community Health (J.Y.B.), University of Pennsylvania School of Nursing, Philadelphia, Pennsylvania, USA; Department of Pediatrics (J.Y.B.), The Perelman School of Medicine at the University of Pennsylvania, Philadelphia, Pennsylvania, USA.
Emily E. Johnston, Department of Pediatrics (E.E.J.), Division of Hematology and Oncology, University of Alabama at Birmingham, Birmingham, Alabama, USA.
Pamela Hinds, Children's National Hospital (P.H.), Department of Nursing Science, Professional Practice & Quality; Department of Pediatrics, The George Washington University, Washington, District of Columbia, USA.
Sarah Friebert, Department of Pediatrics (S.F.), Division of Palliative Care, Akron Children's Hospital and Rebecca D. Considine Research Institute, Akron, Ohio, USA.
Jori Bogetz, Department of Pediatrics (J.B.), Division of Bioethics and Palliative Care, University of Washington School of Medicine, Seattle, Wasington, USA.
Tammy I. Kang, Department of Pediatrics (T.I.K.), Section of Palliative Care, Texas Children's Hospital and Baylor College of Medicine, Houston, Texas, USA.
Matt Hall, Children's Hospital Association (M.H.), Lenexa, Kansas, USA.
Joanne Wolfe, Department of Pediatrics (J.W.), Massachusetts General Hospital and Brigham and Women's Hospital, Boston, Massachusetts, USA.
Chris Feudtner, Justin Ingerman Center for Palliative Care (D.L.H., R.T.N., C.F.), The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA; Department of Pediatrics (C.F.), Medical Ethics and Health Policy, The Perelman School of Medicine at the University of Pennsylvania, Philadelphia, Pennsylvania, USA. Electronic address: feudtner@chop.edu.

Document Type

Journal Article

Publication Date

3-11-2025

Journal

Journal of pain and symptom management

DOI

10.1016/j.jpainsymman.2025.03.007

Keywords

Proxy report; parent; pediatric palliative care; psychological distress; symptom measurement

Abstract

CONTEXT: In pediatric palliative care (PPC), patients often are not able to report symptoms so proxy reports from parents are used. Whether psychological distress in the proxies affects reports of patients' symptoms is unknown. OBJECTIVE: To measure the influence of parents' distress on proxy-reported scores regarding symptoms by analyzing pairs of parents reporting on the same child. METHODS: In a large prospective cohort study of PPC patients, we collected parents' reports of child symptoms (Memorial Symptom Assessment Scale) and their own psychological distress (Kessler-6). In this quasi-experimental design study, we examined data from pairs of parents reporting symptoms for the same child. Using regression modelling, we estimated the association between parental distress scores and patient total symptom scores across the entire sample accounting for clustering within families, and then measured the association within-families of the absolute differences of the two parents' distress and the difference in their symptom scores. RESULTS: Among 152 parents in 76 families, 50.0% were female, 80.9% were White, and the mean age was 36.4 (SD 9.0) years. Across the sample, each 1-point increase in reported parental distress was associated with a 1.07 (95% CI, 0.87-1.28; P < 0.001) increase in proxy-reported patient symptom score. Within families, relative to the other parent, each 1-point increase in the difference of the distress scores was associated with a 0.33-point (95% CI, 0.32-0.35; P = 0.006) increase in the difference in symptom scores. CONCLUSION: Psychological distress appears to influence proxy reports of symptoms which has implications for future research and clinical practice.

Department

Pediatrics

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