Incontinence in Individuals with Rett Syndrome: A Comparative Study.

Giesbers et al. (2012) compared bathroom accidents in girls and women with Rett syndrome to peers with other intellectual disabilities. They mailed a caregiver survey to every Dutch family listed in the national Rett database. The survey asked about daytime wetting, nighttime wetting, stool accidents, and stool texture.

Families also gave basic medical facts. The team then matched each Rett participant to a control participant of similar age and IQ range drawn from residential centers.

Overall, both groups had the same high rate of incontinence. The surprise was in the details: people with Rett syndrome had far more trouble with hard, painful stools than the ID-only group. Wetting rates looked the same, but constipation-related accidents set the Rett group apart.

Matson et al. (2011) already showed that the POTI checklist can reliably screen for these same toileting problems in adults with ID. Sanne’s team used a home-grown survey, but the questions overlap, so you can borrow POTI items when you build your own intake form.

Hake et al. (1983) proved that brief prompting plus social praise cut geriatric incontinence in half. Sanne’s data say Rett clients wet just as often as other ID groups, so the same prompt-and-praise protocol is worth testing with Rett syndrome too.

Together the papers draw a clear line: expect similar wetting rates across ID diagnoses, plan extra bowel care for Rett, and use evidence-based prompting for everyone.

Stop assuming Rett syndrome means double the bathroom accidents. Base your program on the real difference—chronic constipation. Add fiber tracking, fluid logs, and regular sit-schedules to your behavior plan. Use reliable tools like POTI for baseline and follow-up. Target bowel health first; the wetting often improves once the hard stools are gone.