Modification and scoring of a transition tool to understand transition readiness among pediatric kidney transplant recipients.

Background: A successful transition from pediatric to adult healthcare for adolescent and young adult kidney transplant recipients is essential for maintaining graft and overall health. Readiness for transition is multifactorial and can be challenging to assess. The purpose of this study is to describe the development of a scoring system for a transition readiness assessment for pediatric kidney transplant recipients and assess overall and domain-specific readiness for transition.

Methods: This is an observational study of adolescent and young adult kidney transplant recipients over 5 years who were given either the modified Middle (MTRC-m) or modified Late Transition Readiness Checklist (LTRC-m) during post-transplant clinic visits. We developed a scoring system for both checklists and assessed their reliability.

Results: The MTRC-m (38 items) demonstrated good reliability (Cronbach's α = 0.84). The LTRC-m (43 items) demonstrated excellent reliability (Cronbach's α = 0.90). On both the MTRC-m and LTRC-m, patients scored highest on adherence and risky behavior knowledge. Scores were lowest in the "Managing my healthcare needs (self-advocacy)" and "How I feel about myself" domains.

Conclusions: A scored transition assessment allows for rapid appraisal of transition readiness within a clinic setting. We find that participants report high levels of knowledge regarding health-seeking behaviors and risky behaviors, endorse less readiness for managing their care independently, and express a moderate to high degree of worry about their future and their health. While transition programs have traditionally, and necessarily, focused on education, our results demonstrate that programs should expand to also focus on behavior performance and emotional well-being.