Improving healthcare transitions for neurodevelopmental disabilities: Statewide learning collaborative outcomes

Individuals with neurodevelopmental disabilities (NDD) encounter significant challenges during pediatric to adult healthcare transition (HCT). In response, a statewide learning collaborative was designed to improve pediatric-to-adult HCT for individuals with NDD using the Model for Improvement and the Six Core Elements of GotTransition.

Teams including providers from pediatric and adult practices along with family partners participated in a learning collaborative comprising two phases (Phase 1: Oct 2021-May 2022; Phase 2: Nov 2022-May 2023). Activities included monthly team meetings, learning sessions, plan-do-study-act (PDSA) cycles, and use of a transition-tracking registry. Outcomes of participation, satisfaction and usefulness of activities, resources generated, and number of patient transfers were evaluated using self-report surveys at the conclusion of each phase. Lessons learned were shared at a summit at the end of the second phase.

Eight teams (5 primary care, 3 specialty) enrolled in the first phase while five continued in Phase 2. Throughout both phases, teams employed PDSA cycles to create provider- and family-facing resources, integrated registry components into existing systems, and engaged in monthly meetings and learning sessions. Although no team used the registry as designed, all five teams participating in Phase 2 incorporated its elements to strengthen transition workflows. Participant satisfaction was high across both phases (mean ratings >4.1/5), and summit evaluations were overwhelmingly positive. Self-assessments showed modest improvements in transition practices, with persistent challenges in tracking, transfer completion, and adult integration. By phase two, 49 patients were reported as transferred or in process, with outcomes varying by team.

A structured, statewide learning collaborative was feasible, highly engaging, and produced patient movement toward adult care. The results suggest that this collaborative model with facilitators embedded within teams can advance healthcare transition practices for individuals with NDD. In addition to the importance of garnering support from leadership, keystones of learning collaborative success include celebrating accomplishments, allocating dedicated resources to data collection and monitoring, embracing flexibility, and addressing resource shortcomings in the adult system of care. Future learning collaboratives designed to improve care transitions for patients with NDD would benefit from incorporating these considerations and addressing these foci explicitly.