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Original Research Open Access

Misalignment of Priorities in Spina Bifida Transition: Perspectives from Patients, Caregivers, and Providers

  • 1Urology, University of Wisconsin–Madison, Madison, USA
  • 2Pediatric Urology, University of Wisconsin–Madison, Wisconsin, Dane County, Madison, USA
  • 3Pediatric Urology, Mayo Clinic in Florida, Duval County, Jacksonville, USA
+ Affiliations - Affiliations

Corresponding Author

Devante Frantz Delbrune, dfdelbrune@gmail.com

Received Date: June 12, 2026

Accepted Date: July 09, 2026

Abstract

Background: Advances in urologic management have improved survival among individuals with Spina Bifida (SB), making successful transition from pediatric to adult care increasingly important. However, transition remains challenging due to complex medical needs, functional limitations, and healthcare system barriers. We sought to compare patient, caregiver, and provider perspectives on successful transition and identify priorities for improvement.

Methods: We conducted a mixed-methods survey study of patients with SB undergoing transition to adult urologic care, their caregivers, and healthcare providers. Inclusion of patient with SB age ≥11 years who were in the process of transitioning to an adult urologist, as well as their caregivers. Quantitative analyses compared perceptions of access to adult providers, psychosocial support needs, and presence of a formal transition process. Open-ended responses underwent deductive thematic analysis with iterative coding and consensus-based theme development.

Results: Responses were obtained from 24 patients, 23 caregivers, and 45 providers. Patients and caregivers reported rates of access to identified adult providers similar to providers (62% vs. 55%, p=0.55) and similar interest in psychosocial support (59% vs. 53%, p=0.55). However, patients and caregivers when compared to providers were more likely to report the existence of a formal transition process within their healthcare system (75% vs. 30%, p<0.001). Qualitative analysis identified seven primary domains. Patients and caregivers most frequently emphasized readiness, education, and autonomy, while providers prioritized workforce expertise and healthcare system capacity. Strong care coordination and navigation support emerged as a shared priority across all groups. Only 54% of patients reported adequate discussion of sexual health and fertility before transition.

Conclusions: Patients, caregivers, and providers define successful transition differently. Patients and caregivers emphasize independence and readiness for self-management, whereas providers focus on access to experienced adult clinicians and healthcare infrastructure. Care coordination represents a key area of alignment and may serve as a foundation for improved transition programs. Future transition models should incorporate both patient-centered and system-level outcomes, with structured care plans and coordinated support to bridge gaps between stakeholder priorities.

Keywords

Pediatric Spina Bifida, Pediatric urology, Spina Bifida, Transitional care, Transitional urology

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