Introduction: Neurogenic bowel dysfunction is a major health and quality of life concern for individuals with spina bifida. To date, not much is known about how these individuals manage bowel continence issues once they reach independence in adulthood. The purpose of this survey study is to better understand how this population manages their bowel continence and complications, who is helping them with their bowel management, and if they are still using their bowel regimens previously prescribed by pediatric specialists. Methods: An anonymous, web-based survey was distributed through the Spina Bifida Association email listserv and social media support groups. Respondent demographics were obtained. Data regarding childhood and adult bowel regimens, bowel continence surgeries, multidisciplinary care, and use of continence resources were gathered. Chi-Square test and the Mann-Whitney U test were used to analyze the data, with a significance threshold of 0.05. Results: A total of 154 completed surveys were returned. Respondents were primarily female (66%), white (77%), obtained a college or advanced degree (63%), worked full-time (47%), and between the ages of 35-44 years old (42%). 49% continued to use their pediatric bowel regimen into adulthood. 73% of our cohort attended a multidisciplinary spina bifida clinic as a child, but only 35% continued into adulthood. Adults who attended multidisciplinary clinics had more consistent bowel regimens (86% vs 57%), continued their pediatric regimen (62% vs 44%), and had specialists manage their care (64% vs 15%). There is, however, no statistically significant difference between those who attend multidisciplinary clinics and those who do not in the frequency of their soilage (p=0.521) or bother score (p=0.942). Patients who reported never soiling or soiling monthly primarily managed their bowel regimen themselves or with their primary care provider, while those who reported more frequent soiling were more likely to be managed by a specialist (p=0.006). 52% of the patients who never soiled or soiled monthly reported being never or almost never bothered compared to 3% of the patients who soiled weekly or daily (p<0.001). Participants who were the most bothered by their incontinence reported higher amounts of stool in undergarments (p<0.001) and more frequent soiling (p<0.001). The majority of our cohort (55%) reported issues finding a provider to guide their bowel regimen and most reported self-management (73%). Most adults received their continence education from healthcare providers (62%) followed by social media (36%), and the Spina Bifida Association (30%). Of those who have had bowel continence surgery, nearly 51% (26/51) reported having issues as an adult. Conclusion: Our study highlights a gap in healthcare for spina bifida individuals with neurogenic bowel requiring continence care and an unaddressed need in this adult community, particularly for those who have frequent episodes of bowel incontinence. Future studies should examine the readiness of adult urologic providers to manage complex bowel continence issues and surgical complications in this population.
