"We Were Still Left in the Back Field, Not Knowing": Pediatric Cancer Patients and Parents Describe Obstacles to Prognostic Communication

Document Type

Journal Article

Publication Date

4-1-2025

Journal

Cancer medicine

Volume

14

Issue

7

DOI

10.1002/cam4.70810

Keywords

adolescents and young adults; cancer; children; obstacles; parents; prognostic communication

Abstract

PURPOSE: Patient/parent perceptions of poor-quality prognostic disclosure have not been well described, and these data offer important lessons to shape clinical practice and communication skills training. In this study, we aimed to characterize patient/parent negative experiences with prognostic communication to inform future efforts to improve how clinicians disclose prognosis. PATIENTS AND METHODS: Semistructured interviews were conducted with a purposeful sample of pediatric cancer patients (n = 25) and parents (n = 40) across different timepoints in the progressive illness course extending into bereavement. Interviews were audio-recorded, transcribed, and de-identified for rapid qualitative analysis, in which multiple analysts used a standardized episode summary template to extract raw data specific to patient/parent narratives about prognostic disclosure experiences. Analysts engaged independently and collaboratively as a team in reflexive memo writing to identify negative experiences with prognostic communication, followed by team discussion to generate concepts and synthesize those concepts into themes. RESULTS: More than half of participants (59%) described negative experiences with prognostic disclosure, with parents highlighting distressing communication experiences more often than patients (parents: 32/40, 80% vs. patients: 6/25, 24%). Across patient/parent narratives, three main themes underpinned the perception of poor-quality prognostic communication: (1) insufficient information, (2) overwhelming or contradictory information, and (3) absence of person-centered connection. CONCLUSION: Many patients/parents perceived prognostic disclosure to be suboptimal and identified specific features underpinning poor-quality prognostic communication. These findings will inform future collaborative research with patients, parents, and multidisciplinary clinicians to codesign an intervention that individualizes prognostication to align with patient/parent preferences for receiving information and fostering connection.

Department

Pediatrics

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