Lurie Children’s Awarded $10 Million by PCORI to Study Ways to Improve Bowel Continence in Patients with Spina Bifida

Ann & Robert H. Lurie Children’s Hospital of Chicago has been approved for $10 million in research funding by the Patient-Centered Outcomes Research Institute (PCORI) for a study that will examine ways to improve bowel continence in people with spina bifida.

Spina bifida, a condition affecting about 166,000 people in the U.S., is a birth defect that affects the spinal cord and several organ systems throughout the body, such as the bowels and intestines. Consequently, bowel incontinence, or accidents, occurs frequently. Because bowel incontinence can be highly disruptive to patients’ lives, it has been recognized as a top priority for research in the spina bifida community.

Treatment for bowel incontinence typically follows a step-by-step approach. If oral medications like laxatives don’t work, doctors recommend enemas to help empty the bowels. There are two main types: retrograde enemas, or those given in a backward direction through the anus; and antegrade enemas, or those delivered in a forward direction through a tube placed at the start of the large intestine. These two main types of enema programs are commonly used but have different advantages and disadvantages and have not previously been compared or studied thoroughly.

The PCORI-funded study will compare how retrograde versus antegrade enema programs impact patient-reported outcomes of continence, quality of life, symptoms, self-management and independence for people with spina bifida enduring bowel incontinence.

Researchers will enroll 943 participants (ages 5+) across 24 U.S. medical centers to compare the two enema programs over a 12 month study period. Through interviews with children and families, the study will also seek to understand real-life experiences, including challenges and what helps people successfully manage bowel incontinence.

“Each enema method has benefits and drawbacks, but there is little research comparing them, especially over the lifespan. As children with spina bifida grow up and become more independent, it’s important to know which option works best. Currently, many families and individuals struggle to make informed decisions about their bowel care,” said Principal Investigator David Chu, MD, MSCE, Attending Physician in Urology at Lurie Children’s and Associate Professor of Urology, Northwestern University Feinberg School of Medicine. “The study will help people with spina bifida improve their bowel care and overall well-being.”

Ann & Robert H. Lurie Children’s Hospital of Chicago is a nonprofit organization committed to providing access to exceptional care for every child. It is the only independent, research-driven children’s hospital in Illinois and one of less than 35 nationally. This is where the top doctors go to train, practice pediatric medicine, teach, advocate, research and stay up to date on the latest treatments. Exclusively focused on children, all Lurie Children’s resources are devoted to serving their needs. Research at Lurie Children’s is conducted through Stanley Manne Children’s Research Institute, which is focused on improving child health, transforming pediatric medicine and ensuring healthier futures through the relentless pursuit of knowledge. Lurie Children’s is the pediatric training ground for Northwestern University Feinberg School of Medicine. It is ranked as one of the nation’s top children’s hospitals by U.S. News & World Report.