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Healthcare transition in spina bifida: A national mixed method study
Betsy Hopson1, Kathy H Huen2, Molly B Richardson3
1Department of Urology, University of Alabama at Birmingham (UAB), 1600 7th Ave South, Lowder 400, Birmingham, AL 35233-1711, US.
Health Care Transitions
|February 2, 2026
Summary
Healthcare transition for adolescents and young adults with spina bifida (SB) is inconsistent. Improving continuity, competence, and connection requires early planning and national support for better adult engagement.
Area of Science:
- Pediatric Healthcare
- Transition Medicine
- Spina Bifida Management
Background:
- Adolescents and young adults (AYA) with spina bifida (SB) face significant healthcare transition (HCT) challenges.
- Fragmented systems and limited adult provider availability hinder effective HCT.
- Current HCT practices within the Spina Bifida Association (SBA) Clinical Care Partner (CCP) network are not well understood.
Purpose of the Study:
- To examine clinician perspectives on HCT practices, barriers, facilitators, and success indicators within the SBA CCP network.
- To identify areas for improvement in HCT for AYA with SB.
- To inform a national strategy for optimizing HCT.
Main Methods:
- An explanatory sequential mixed methods design was employed.
- A survey of clinicians (n=20) assessed HCT workflows, barriers, and resources.
- A multidisciplinary focus group (n=12) explored findings in depth, followed by thematic analysis and integration.
Main Results:
- Significant variability in HCT implementation was observed, with only 15% of sites fully implementing workflows.
- Key barriers included adult provider availability, insurance, and transportation.
- Successful transition hinges on continuity, competence, and connection, with strong support for an adult-provider registry.
Conclusions:
- HCT processes within the SBA network are in early development, limited by workforce and infrastructure.
- Actionable targets for a national strategy include early planning, multidisciplinary support, and centralized resources.
- Strengthening outcome tracking is crucial for improving continuity and long-term adult engagement.
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