Healthcare transition in spina bifida: A national mixed method study

Adolescents and young adults (AYA) with spina bifida (SB) face substantial challenges during the transition from pediatric to adult healthcare, including fragmented systems, limited adult provider availability, and gaps in self-management readiness. Despite national guidelines, little is known about how transition practices are implemented across the Spina Bifida Association (SBA) Clinical Care Partner (CCP) network. This study examined clinician perspectives on current practices, barriers, facilitators, and definitions of successful healthcare transition (HCT).

Using an explanatory sequential mixed methods design, we first conducted a 47-item survey with clinicians from SBA CCP clinics (n = 20/32; 62.5 % response rate). Survey items assessed clinic characteristics, HCT workflows, barriers, facilitators, success indicators, and resource needs. Quantitative results informed the second phase, a 120-minute multidisciplinary focus group (n = 12) conducted at the 2025 SBA Clinical Care Meeting. The transcript underwent inductive thematic analysis, and findings from both strands were integrated using a joint display.

Quantitative findings revealed wide variability in HCT implementation: only 15 % of sites had fully implemented workflows; 40 % tracked successful transfer. Adult provider availability, insurance instability, and transportation were the most significant barriers. Clinics strongly endorsed the need for national support, particularly in the form of an adult-provider registry (80 %). Qualitative analysis expanded these findings, highlighting critical themes of early structured HCT planning, multidisciplinary coordination, systems-level fragmentation, and the emotional burden of HCT on families and clinicians. Integrated results showed convergence around three core components of successful transition--continuity, competence, and connection.

Across the SBA network, HCT processes remain early in development, constrained by limited adult workforce capacity and inconsistent infrastructure. Findings identify clear, actionable targets for the national strategy, including early planning, multidisciplinary team support, centralized SBA resources, and strengthened outcome tracking to improve continuity and long-term adult engagement.