Optimizing health care for adults with spina bifida

Abstract

Survival into adulthood for individuals with spina bifida has significantly improved over the last 40 years with the majority of patients now living as adults. Despite this growing population of adult patients who have increased medical needs compared to the general population, including spina bifida (SB)-specific care, age-related secondary disabilities, and general adult medical needs, there is little published information about the natural history of SB in adulthood. There are few published studies of medical conditions, interventions, or long-term complications in this population. This article will provide a review of the medical issues of adults with SB, highlighting areas that are different than pediatric care, and areas of needed research.

Rehabilitation outcomes in persons with spina bifida: A randomised controlled trial

“…Participants in this study were similar to those in other studies in terms of age, gender, disease severity and treatment (30)(31)(32)(33)(34). The ID rehabilitation programme provided standard treatment and management in accordance with existing care protocols and guidelines (4,8).…”

“…The aetiology of SB is unknown, and can be heterogeneous, including chromosome abnormalities, single gene disorders, and teratogenic exposure (3). Although there is improved survival of persons with SB (pwSB) (78% survive to ≥ 17 years) due to better management of diseaserelated complications and medical care (4,5), many have disease-and age-related secondary disabilities, which require interdisciplinary (ID) care over a lifetime (6). SB remains a significant cause of chronic disability worldwide, with associated financial, economic and personal costs to the pwSB, their carers and the community (6).…”

“…Numerous complications result from various childhood procedures (such as ventriculo-peritoneal shunts, urinary diversionary procedures, orthopaedic surgery) (8,9). As the disease progresses other issues surface, such as tethered cord, syringomyelia, degenerative musculoskeletal issues, osteoporosis, cardiopulmonary disease, obesity, latex sensitivity, and others (4,8). These disabilities have a cumulative effect in pwSB, reduce their quality of life (QoL) and can cause considerable distress.…”

Effectiveness of the Interdisciplinary Ambulatory Rehabilitation Program in Persons with Spina Bifida

“…With advances in medical care and better management of disease-related complications, the survival of persons with SB (pwSB) has improved (78% survive to >17 years) however, many have disease and age-related secondary disabilities, which require interdisciplinary (ID) care over a lifetime [2][3][4]. It remains a significant cause of chronic disability worldwide and is associated with financial, economic and personal costs to the pwSB, their careers and the community [4].…”

“…Numerous complications result from various childhood procedures (such as ventriculo-peritoneal shunts, urinary diversionary procedures, orthopaedic surgery), and as disease progresses other issues surface, such as tethered cord, syringomyelia, degenerative musculoskeletal issues, osteoporosis, cardiopulmonary disease, obesity, latex sensitivity and others [2,5,6]. These disabilities have a cumulative effect in pwSB, which reduce their quality of life (QoL) and can cause considerable distress.…”