Stepping into adulthood: pediatric cancer survivors and their parents’ perspectives on the transition from pediatric to adult care

Abstract

Aims: The transition from pediatric to adult healthcare is crucial for adolescent cancer survivors due to the potential lifelong late effects of their treatment. Despite the importance of ongoing follow-up care, attendance often declines after transitioning to adult services. This study explores the perspectives of adolescent and adult pediatric cancer survivors and their families on this transition process. Methods: Using the Theory of Planned Behaviour, we developed interview guidelines and conducted 36 episodic narrative interviews with survivors and their parents. Our analysis focuses on their transition experiences and expectations, as part of the broader VersKiK-Study aimed at improving (long-term) follow-up care for pediatric cancer survivors in Germany. Results: Findings show that although transitioning is viewed as a significant step toward adulthood, a lack of preparedness and anxiety can hinder a shift between healthcare systems. Survivors expressed the need to initiate the transition process while still under pediatric care. Clear and effective communication was identified as key to ensuring a smooth transition. Adult survivors acknowledged the transition's importance in fostering self-reliance and independence. Conclusions: To facilitate better outcomes, transition planning should include early introductions to adult care providers and strong communication strategies to address the emotional and psychosocial challenges faced by adolescent cancer survivors. Aligning transition practices with the needs and concerns of survivors could enhance follow-up care engagement, ultimately improving long-term outcomes for pediatric cancer survivors.