Transitioning to an Adult Healthcare System: Barriers and Opportunities For Youth with Spina Bifida

This quality improvement project aimed to identify barriers and opportunities for successful transition from pediatric to adult health care for a clinic sample of youth with spina bifida. Pediatric patients (N = 16) with spina bifida between the ages of 14 and 21 years and a family member were recruited from the Spina Bifida Clinic at a large regional medical center to participate in a face-to-face semi-structured interview. A standard guide, including select questions from the National Survey of Children with Special Health Care Needs along with inquires specific to the population and clinic setting, were used for each interview. The Health Services Utilization model provided an overall conceptual framework. A total of 16 interviews with patients and family member were completed. Only 25% of the participants reported previous conversation with their pediatric providers regarding transition to adult health care. Meeting adult providers prior to transition (93.8%), a desire for a written transition plan (68.8%), and possessing a copy of the transition policy (68.8%) were identified as beneficial in transition planning. Qualitative findings suggest that parents of children with greater intellectual and physical disability reported increased worry surrounding transition when compared to parents of higher functioning children. Despite availability of published recommendations regarding transition for over a decade, challenges in transition preparation among pediatric patients with spina bifida remain. Feedback from families highlights the need for increased planning, particularly for those with greater functional impairments. Findings will guide the development of a local clinic transition program to address concerns and implement key interventions identified for youth with spina bifida, and offer insight that other nurses and clinics may use in their own settings. Results underscore the ongoing, and as yet, unmet concerns of patients and families.