Bowel continence in adult individuals with spina bifida: Who takes ownership of care?

INTRODUCTION: Neurogenic bowel dysfunction is a significant health and quality-of-life concern for individuals with spina bifida. To date, little is known about how these individuals manage continence issues once they reach independence in adulthood. The purpose of this study is to better understand how adults with spina bifida manage their bowel continence, surgical complications, and coordination of care.

STUDY DESIGN: An anonymous web-based survey was distributed through the Spina Bifida Association (SBA) e-mail listserv and various social media groups. Data regarding demographics, bowel management techniques used during childhood and adulthood, bowel continence surgeries, multidisciplinary care, and use of online education resources on bowel continence were gathered. Chi-Square test and the Mann-Whitney U test were used to analyze the data, with a significant threshold of 0.05.

RESULTS: In total, 154 surveys were completed. Respondents were primarily female (66 %), white (77 %), obtained a college, technical school, or advanced degree (67 %), worked full time (47 %), and were between 35 and 44 years old (42 %). 73 % of our cohort attended a multidisciplinary spina bifida clinic as a child, but only 35 % did in adulthood. Adults who attended multidisciplinary clinics had more consistent bowel management (86 % vs 57 %, p < 0.001) and had specialists managing their care (64 % vs 15 %, p < 0.001). There was, however, no statistically significant difference between those who attended multidisciplinary clinics and those who did not in their frequency of incontinence (p = 0.521) or bother score (p = 0.942). Continent respondents were more likely to be managed by their primary care provider (11 % vs 5 %) or themselves (71 % vs 56 %) and were less likely to be managed by a specialist (20 % vs 25 %) compared to those who were incontinent (p = 0.006). 52 % of the continent respondents reported being never or almost never bothered by their incontinence compared to 3 % of the incontinent individuals (p < 0.001). The majority of our cohort (55 %) reported issues finding a provider to guide their bowel management, and most reported self-management (73 %). Most adults received their continence education from health care providers (62 %), followed by social media (36 %) and the SBA (30 %).

CONCLUSION: Our study highlights a gap in health care for spina bifida individuals with neurogenic bowel dysfunction requiring continence care, particularly for those who have frequent episodes of incontinence. Future studies should examine the readiness of adult urologic providers to manage complex bowel incontinence issues and surgical complications in this population.