Preferences for Communication About Prognosis Among Children With Cancer, Parents, and Oncologists.

IMPORTANCE

Pediatric oncologists infrequently ask patients and parents about their preferences for receiving information about prognosis prior to initiating difficult conversations. The willingness of patients, parents, and oncologists to engage in discussions about prognostic disclosure preferences and their perceptions of best practices in these discussions remain understudied.

OBJECTIVE

To explore and characterize recommendations from patients with pediatric cancer, as well as parents and oncologists, for if or how oncologists should elicit communication preferences regarding prognosis in advanced pediatric cancer.

DESIGN, SETTING, AND PARTICIPANTS: This qualitative study used responses from patients with pediatric cancer, parents, and oncologists in single interviews conducted between 2022 and 2023. Eligible patients were aged 12 years or older and recruited from an academic pediatric cancer center and 5 affiliated referring centers across 5 states. Interviews were conducted at different time points in the advancing illness course. A framework for patient-clinician communication domains was used to organize interviews and summarize data, with rapid analysis conducted to generate themes.

EXPOSURES

Poor prognosis pediatric cancer at different time points across the illness course: diagnosis, relapse or disease progression, phase 1 or 2 trial enrollment, and bereavement.

MAIN OUTCOMES AND MEASURE

Identification of themes regarding patient, parent, and oncologist preferences for eliciting and disclosing prognostic information.

RESULTS

The 85 participants surveyed included 25 patients (13 patients aged 12-14 years [52%]; 14 male [56%]; 6 Black [30%], 18 White [65%]), 40 parents (32 female [80%]; 14 Black [35%], 24 White [60%]), and 20 oncologists (14 female [70%]; 6 Asian [30%], 13 White [65%]), nearly all wanted to receive prognostic disclosure. Some patients, most parents, and most oncologists advocated for prognostic disclosure even if not requested or desired by patients or their parents, with 2 themes driving this recommendation: placing trust in medical experts and needing to stay informed. Most patients and parents, and some oncologists, emphasized the benefits of eliciting communication preferences before disclosing prognosis, generating 2 main themes: the value of individualized information and protecting mental and emotional well-being of patients and parents. Participants recommended targeted strategies to elicit prognostic communication preferences guided by 3 themes: ask questions, give options, and consider delivery or tone.

CONCLUSIONS AND RELEVANCE

In this qualitative study of prognostic communication preferences, patients, parents, and oncologists recommended eliciting patient and parent preferences for prognostic disclosure in advance and provided advice for achieving this goal. Future work will integrate these recommendations in the development of targeted interventions to support individualized prognostic disclosure in advanced pediatric cancer.