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Understanding the Why: Patient, Parent, and Oncologist Perspectives on Prognostic Communication Preferences in
Erin Batchelor1, Rachel A Kentor2, Calliope Reeves1,3
1Department of Oncology, St Jude Children's Research Hospital, Memphis, TN 38105, USA.
Background/Objectives:
High-quality prognostic communication in pediatric oncology is essential to support informed decision making, foster trust, and honor goals of care. While families differ in their preferences for how prognosis is discussed, clinicians often rely on assumptions rather than directly eliciting these preferences, risking misalignment and distress. To address this gap, we aimed to characterize patient, parent, and oncologist perspectives on key variables, experiences, and circumstances that influence their preferences for prognostic communication.
Methods:
Semi-structured interviews were conducted with 85 participants (25 patients aged 12-25, 40 parents, and 20 oncologists) to elicit their preferences for prognostic communication and the reasons behind these preferences. Rapid analysis was conducted to generate themes and identify patterns and variances across participant cohorts.
Results:
Four distinct themes underpinning prognostic communication preferences were described by patients, parents, and oncologists: (1) personality, ideals, and values; (2) general life experiences; (3) prior interactions with the medical system; and (4) faith. Participants emphasized that personal identity and prior experiences significantly shaped how they wished to receive prognostic information. Clinicians and parents often linked preferences to core aspects of their professional or caregiver identities.
Conclusions:
Understanding the individualized factors shaping communication preferences can guide clinicians in tailoring prognostic discussions. Open-ended inquiry into identity, personal values, and past experiences can foster respectful, personalized communication in pediatric oncology. Further research is needed to determine best practices for prompting discussion about prognostic communication preferences that incorporates the reasons underpinning these preferences.
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