Comparing Two Types of Enema Programs to Improve Bowel Control in Children and Adults with Spina Bifida

What this Trial Is About

Researchers are studying how different enema programs affect bowel control in children and adults with spina bifida, a rare condition that impacts the spinal cord and many body systems, including the bowels. The study focuses on comparing two types of enema programs to find out which one better prevents bowel accidents and improves quality of life, independence, and bowel symptoms. This observational study involves participants starting a new enema program and follows their progress over one year. The study compares retrograde enemas, given through the rectum, and antegrade enemas, given through a surgically created tube at the start of the colon. Participants receive their assigned enema program as part of usual care from their healthcare providers. The study collects information at three time points before starting the enema program, 6 months after, and 1 year after. Additionally, interviews with children, adults, and caregivers explore experiences with managing bowel incontinence and maintaining enema programs. Participants will complete online surveys at these time points to assess bowel continence, bowel symptoms, satisfaction, quality of life, self-management, independence, and healthcare use related to bowel issues. The study tracks how well each enema program works and how it affects daily life. The total participation duration is one year, with data collected to help improve bowel care and quality of life for people with spina bifida.

Bowel Continence Across the Lifespan in People With Spina Bifida