Transition of care: lessons from the Standardizing Care to Improve Outcomes in Pediatric End Stage Renal Disease (SCOPE) dialysis collaborative.

Abstract

Acknowledging the importance of preparing the pediatric dialysis patient for successful transfer to adult providers, centers from the Standardizing Care to Improve Outcomes in Pediatric End Stage Renal Disease (SCOPE) Dialysis Collaborative developed transition tools and performed iterative implementation of a transition of care (TOC) program to gain real-life insight into drivers and barriers towards implementation of a transition program for patients receiving dialysis. A TOC innovation workgroup was developed in 2019 from within SCOPE Collaborative that developed nine educational modules, along with introductory letter and assessment tool to be utilized by SCOPE centers. A 4-month pilot implementation study among six centers of varying patient population (age ≥ 11years) was performed. TOC tools were further refined, and broader implementation within the collaborative was performed. Interim assessment of TOC tool utilization and implementation success was performed among 11 centers, as a foundation towards broader discussion regarding process, barriers, and success towards TOC implementation among 26 centers. Transition champion was a key driver of successful implementation, and lack of institutional support and collaboration with adult dialysis centers were important barriers towards sustainability. COVID pandemic and increased staff turnover affected longer term implementation of TOC program. Successful transition and transfer of adolescents/young adults with kidney failure on dialysis remains a challenge. This study represents the experience of the largest cohort of pediatric dialysis centers, with diversity in population size and geography, towards development and implementation of a TOC program. This adds to the resources available to assist centers towards transition and transfer, with particular focus on transitioning patients on dialysis.