Variation in bowel and bladder continence across US spina bifida programs: A descriptive study.

This is a descriptive registry study, not a trial, so it cannot show that any clinic, intervention, or therapy caused better continence. Clinics were not required to enroll all eligible patients, so differences in who was enrolled may have affected continence rates. Continence was recorded from interview, chart review, or questionnaire, and the way questions were asked was not standardized. The definitions did not allow for small or infrequent leakage, so occasional accidents counted as incontinence. People with no or minimal problems may not attend specialized spina bifida clinics, so the sample may not represent all people with spina bifida. The registry did not objectively measure bowel or bladder function, and it did not assess adherence, parental or family education, or detailed socioeconomic factors. Errors in data acquisition and entry cannot be eliminated in a 20-site registry, although quality checks were used.

The authors reported no conflicts of interest. The National Spina Bifida Patient Registry was funded by the Centers for Disease Control and Prevention.

Do not conclude that clinics with higher continence rates provide better care or that specific therapies caused the difference. The study is descriptive, did not compare interventions, and clinic variation remained even after recorded patient factors were considered.