Help Navigate the Process: Early Information and Communication About Late Effects of Pediatric and Adolescent Cancer

Abstract

Purpose: Families value up-front information about potential late effects (LE) of their child's cancer treatment. Yet, many parents and survivors feel uninformed about the risks of LE and unprepared for survivorship. We sought to identify patient, survivor, and parent information needs and preferences for early communication about LE.

Methods: We conducted a single-institution qualitative semistructured interview study with parents of children with cancer (on treatment and survivors) and adolescent and young adult (AYA) patients (on treatment and survivors) from April 2022 to April 2023. Purposeful sampling ensured diversity in diagnoses and sociodemographics. Interviews were audio-recorded, transcribed, and individually coded. Team-based iterative analysis identified themes within and across participant groups to identify areas of alignment and differences.

Results: Thirty-six semistructured interviews were conducted with 42 participants: parents of patients receiving treatment (n = 13), parents of survivors (PSs, n = 12), AYA patients receiving treatment (n = 7), and AYA survivors (n = 10). Two key themes emerged: participants (1) valued LE information to prepare for the future although it can be emotionally difficult to hear and (2) expressed widespread support for a personalized, early LE communication resource. Key distinctions emerged between those actively receiving treatment and survivors: active treatment patients and parents endorsed feeling overwhelmed and preferred graduated LE information, whereas survivors and PSs more uniformly valued early information and were more likely to perceive gaps. Comparing parent and patient perspectives, parents expressed considerable worry about LE; many AYAs voiced lack of concern.

Conclusion: Parents and patients value LE information but have varied preferences for detail and timing. In survivorship, many wished that they had received more comprehensive up-front information. Further efforts are needed to tailor personalized communication regarding risks of LE.