Navigating the transition: the crucial shift from pediatric to adult care for individuals living with spina bifida

Abstract

OBJECTIVE Spina bifida (SB) is a complex congenital condition characterized by incomplete closure of the neural tube, resulting in varying degrees of physical and neurological impairment. Although commonly managed by multidisciplinary pediatric clinics, a substantial proportion of SB patients are now living into adulthood, necessitating the transition from pediatric to adult healthcare. This transition introduces a myriad of challenges for individuals living with SB and their families. Prior research on SB transition programs has demonstrated anecdotal success; however, minimal research has been published on early posttransition health outcomes and compliance with medical recommendations. This quality improvement study assessed early posttransition compliance with medical recommendations, adverse health events, access to medical supplies/equipment, and patient-reported health outcome and confidence in medical providers. METHODS Adult participants in the Spina Bifida Transition Clinic at the authors’ pediatric institution were invited to complete a telephone survey after transition to adult care. The mean (SEM) elapsed time since transition was 1.21 (0.11) years. The survey evaluated adult provider utilization, accessibility of medical supplies and equipment, adverse medical events, compliance with sleep study acquisition, patient-reported health status, and satisfaction with providers. RESULTS Of 52 eligible participants, 49 (94%) completed a telephone survey. Within the cohort, 82% had open SB (myelomeningocele), with the remaining having occult SB (lipomyelomeningocele). The mean age at transition was 26.0 years. Since transition, 78% have attended at least one primary care visit, with 76% seeking care from at least one adult care specialist (69% sought care with urologists). Forty-five percent reported an adverse medical event: 31% required an emergency department visit, 22% were hospitalized, 18% underwent surgery, and 24% had skin breakdown. Access to medical supplies varied, with patients experiencing the most difficulty obtaining wheelchairs and assistive walking devices. Patients rated pediatric provider engagement and knowledge of SB significantly higher than adult providers (mean 3.92 vs 3.32, p < 0.001). CONCLUSIONS This quality improvement study evaluated the effectiveness of our Spina Bifida Transition Clinic in the early post transition period. While patients have used primary and specialty care (urology), they have experienced many adverse events and low compliance with sleep study acquisition. Continued evaluation of transition programs is required to optimize the outcome of those living with SB.