1Department of Neurological Surgery, University of Cincinnati College of Medicine; and.
3Center for Spina Bifida Care, Division of Developmental and Behavioral Pediatrics, and.
Neurosurg Focus. 2019 Oct 1;47(4):E16. doi: 10.3171/2019.7.FOCUS19441.
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.
脊柱裂是最常见的非染色体出生缺陷，导致多器官系统永久性残疾，但可长期存活。各个学科的重要进展现在已经提高了脊柱裂患者的生存率。虽然大多数患有脊柱裂的人现在已经成年，但神经外科学文献中关于成人脊柱裂患者的护理、相关医疗状况、手术干预和长期并发症的出版物很少。为患有脊柱裂的成年患者过渡的主要目标是保持功能和促进独立以及整体健康。然而，我们对这个老龄化患者群体的复杂需求的认识和理解还存在许多空白。本文的目的是提供一份关于脊柱裂患者向成年过渡所涉及的挑战和考虑因素的文献综述。本综述的独特之处在于，作者提供了与一位患有脊柱裂的成年患者的第一手个人交流和访谈，讨论了许多过渡方面的挑战。
