Specific healthcare responsibilities and perceived transition readiness among adolescent solid organ transplant recipients: Adolescent and caregiver perspectives

Abstract

Objective: Adolescents and young adults (AYAs) with solid organ transplants must attain responsibility for healthcare tasks during transition to adult healthcare. However, healthcare systems often initiate transfer based on age and not independence in care. This study examines specific responsibilities distinguishing AYA organ transplant recipients reporting readiness to transfer.

Methods: 65 AYAs (ages 12-21) with heart, kidney, or liver transplants and 63 caregivers completed questionnaires assessing AYA's transition readiness, healthcare responsibility, and executive functioning. Categorizations included mostly/completely ready versus not at all/somewhat ready to transition; responsibility was compared between groups.

Results: 42% of AYAs and 24% of caregivers reported AYAs as mostly/completely ready to transition. AYAs mostly/completely ready reported similar routine healthcare responsibility (e.g., medication taking, appointment attendance), but greater managerial healthcare responsibility (e.g., knowing insurance details, appointment scheduling), compared to AYAs not at all/somewhat ready to transition.

Conclusions: All AYAs should be competent in routine healthcare skills foundational for positive health outcomes. However, the managerial tasks distinguish AYAs perceived as ready to transfer to adult healthcare.

Practice implications: Emphasis on developing responsibility for managerial tasks is warranted. The Hierarchy of Healthcare Transition Readiness Skills is a framework by which AYA responsibility can be gradually increased in preparation for transfer.

Keywords: Adolescence; Organ transplantation; Transition; Transition readiness.