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Neurosurg Focus. 2019 Oct 1;47(4):E16. doi: 10.3171/2019.7.FOCUS19441.

Growing up with spina bifida: bridging the gaps in the transition of care from childhood to adulthood.

Author information

1
1Department of Neurological Surgery, University of Cincinnati College of Medicine; and.
2
3Center for Spina Bifida Care, Division of Developmental and Behavioral Pediatrics, and.
3
4Transition Medicine, Division of Adolescent and Transition Medicine, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.
4
2Division of Pediatric Neurological Surgery.

Abstract

Spina bifida is the most common nonchromosomal birth defect, resulting in permanent disability of multiple organ systems, yet compatible with long-term survival. Important advances across various disciplines have now improved survival among the spina bifida population. Although the majority of individuals living with spina bifida are now adults, there are few publications in the neurosurgical literature regarding the care of adults with spina bifida, associated medical conditions, surgical interventions, and long-term complications. The major goals for transitioning adult patients with spina bifida are preservation of function and promotion of independence as well as general overall health. Nevertheless, many gaps exist in our knowledge and understanding of the complex needs of this aging patient population. The goal of this paper was to provide a comprehensive updated review of the literature regarding the challenges and considerations involved in the transitional care to adulthood for patients with spina bifida. Unique to this review, the authors provide a first-hand personal communication and interview with an adult patient with spina bifida that discusses many of these challenges with transition.

KEYWORDS:

CM-II = Chari malformation type II; CPC = choroid plexus cauterization; Chiari II malformation; ETV = endoscopic third ventriculostomy; NSBPR = National Spina Bifida Patient Registry; QOL = quality of life; SB = spina bifida; TCS = tethered cord syndrome; TRAQ = Transition Readiness Assessment Questionnaire; myelomeningocele; neural tube defect; spina bifida; tethered cord syndrome; transitional care

PMID:
31574470
DOI:
10.3171/2019.7.FOCUS19441

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