INTRODUCTION AND OBJECTIVES: Up to 85% of children with spina bifida survive to adulthood. Little information exists to guide patients’ transition from pediatric to adult healthcare providers as they age. The objectives of this work are to identify barriers and facilitators of this medical transition for adolescents and young adults with spina bifida.

METHODS: A qualitative analysis was undertaken of semi-structured individual interviews with patients with spina bifida and their parents. Patient eligibility included age 14 or greater and receipt of care through an outpatient, multi-specialty myelodysplasia clinic. Thirty minute interviews were conducted during clinic visits held between July and October 2009. Medical transition questions were theoretically-based, drawing on Prochaska and DiClemente’s Stages of Change theory and the Andersen-Aday Health Services Utilization model. Interview data were audio-taped, transcribed and analyzed with deep-reading and line-by-line coding by two independent analysts working in an iterative and inductive fashion.

RESULTS: Of 16 eligible families, 15 patients and 14 parents were interviewed. Patients age averaged 18.0 years (standard deviation 2.8). Five (33%) patients were male, seven (47%) were cognitively-limited, and nine (60%) were considered high medical-complexity. Seven patients (47%) had transitioned their primary care to an adult provider. Youths who were assuming more of their own care tasks and who were farther along in making transitions to adult providers had higher cognitive functioning, had a greater interest in being medically and socially independent of parent supervision, were exposed to a parenting style that fostered their independence, and were residents in communities outside the immediate metropolitan area of the clinic transitioned easily. Barriers to medical transition included lower cognitive ability, impaired physical ability, higher medical complexity, shyness, lack of parent awareness of medical transition needs, dependency on the myelodysplasia clinic for all care coordination needs, and experience with adult specialists who they perceived as not accepting of their needs.

CONCLUSIONS: Patient cognitive ability, medical complexity, interpersonal style, parenting style, strict reliance by the patient on the myelodysplasia clinic for all care coordination needs, and perception that adult providers are not accepting spinal bifida patients are important factors to consider when developing strategies to facilitate the medical transition of adolescents and young adults with spina bifida to adult providers.

Source of Funding: Deborah Munroe Noonan Foundation