A Typology of Transition Readiness for Adolescents with Congenital Heart Disease in Preparation for Transfer from Pediatric to Adult Care

Abstract

To understand the effectiveness of a nurse-led transition intervention by analyzing qualitative data generated in the context of a clinical trial.Design & methods: Qualitative study of a two-session transition intervention conducted by registered nurses at two sites. Adolescents aged 16-17 years with moderate or complex congenital heart disease (CHD) had been randomized to a two-session transition intervention or usual care. Session 1 emphasized patient education including creation of a health passport and goal setting. Session 2, two months later, emphasized self-management. Qualitative data extracted from intervention logs, field notes and audio recordings of the sessions were analyzed for content and themes. Results: Data from 111 transition intervention sessions with 57 adolescents were analyzed. Creating a health passport, goal setting, and role-plays were the elements of the intervention most valued by participants. A typology of transition readiness was identified: 1) the independent adolescent (5%), already managing their own care; 2) the ready adolescent who was prepared for transition after completing the intervention (46%); 3) the followup needed adolescent who was still in need of extra coaching (26%), and 4) the at-risk adolescent who warranted immediate follow-up (14%). Baseline knowledge and transition surveys scores validated the typology. Conclusions: A two-session nursing intervention met the transition needs of approximately half of adolescents with CHD. However, additional transition-focused care was needed by 40% of participants (groups 3 and 4). Practice implications: These findings will guide pediatric nurses and other healthcare professionals to optimize an individualized approach for ensuring transition readiness for adolescents with CHD.

Navigating Disrupted Puberty: Development and Evaluation of a Mobile-Health Transition Passport for Klinefelter Syndrome

“…Indeed, the Lausanne University Children's Hospital has developed and uses a transition passport for type 1 diabetes and Turner Syndrome. Other groups have published findings on similar passports for AYAs with diabetes ( 46), inflammatory bowel disease (47), congenital heart defects (48,49), and osteogenesis imperfecta (50). While the KS Transition Passport is not an intervention to specifically improve physical and intellectual development, we envisioned it as a psycho-educational tool to enhance patient awareness and understanding of their condition and to support patient activation (i.e., PEMAT actionability domain).…”