Perspectives on Care Plans for Adolescent and Young Adult Survivors of Childhood Cancer: A Qualitative Evaluation of Survivors, Caregivers, and Oncology and Primary Care Practitioners.

Abstract

Purpose: Treatment advances have led to a rapidly growing population of adolescent and young adult (AYA, ages 15-29) survivors of childhood cancer. Despite cure, AYA are physically and psychologically vulnerable due to treatment toxicity, leading 70% to develop second cancers or chronic, often life-threatening, late effects. Self-management is critical for survivorship and includes lifelong follow-up care, health promotion, disease surveillance, and management of late effects. Survivorship care plans (SCPs) are documents to inform survivors and providers of recommendations for management of survivor health and to improve communication among providers. With limited SCP research to date, there are calls for rigorous research to understand SCP implementation. Methods: Qualitative semistructured interviews were conducted to assess perceptions about SCPs, including barriers and facilitators of SCP implementation among 12 purposefully sampled AYAs who received an SCP in the extant trial, 8 caregivers of AYA, 10 oncology providers, and 8 pediatric primary care providers. Results: Overall, SCPs were viewed as generally positive by AYA and caregivers, with caveats about ways to improve them or use them. Oncology providers also generally had a positive view of the SCP, but primary care practitioners found them to be less targeted to their specific needs. Conclusion: Our results helped to clarify critical aspects of implementation that need to be addressed if SCPs are to be successfully implemented into survivorship care for AYA, especially as they transition to adult-oriented health care.