Identifying metrics of success for transitional care practices in childhood cancer survivorship: A qualitative interview study of parents

Abstract

Background: Survivor-focused care for adolescent and young adult (AYA) childhood cancer survivors (CCS) often involves their parents. Recognizing the importance of parents in the ongoing care of CCS, our study sought to identify key aspects of a successful transition for CCS from pediatric- to adult-centered care from the parent perspective. Methods: We conducted qualitative interviews with 26 parents of CCS who were receiving care in the long-term follow-up (LTFU) clinic at a single institution. We used a semi-structured interview protocol with the parents and conducted a thematic content analysis. Results: Using a constant comparison approach, data revealed three primary themes regarding parents’ perspectives toward ensuring a seamless transition from pediatric- to adult-centered follow-up care: (1) the transition needs to include seamless communication between all involved parties, (2) survivors need to demonstrate sufficient health care self-efficacy in order to achieve a successful transition, and (3) the survivor-focused care should include support for survivors’ overall well-being, including financial and health insurance literacy. Conclusions: For parents of AYA CCS, the optimal pediatric to adult care transition model should include mechanisms that facilitate communication between parents, CCS, and survivor-focused providers while also supporting self-efficacy and financial literacy as it relates to health insurance.