Adults With Intellectual Disabilities and Incontinence: Assessment and Toileting Issues.
Janet Finlayson, Dawn A Skelton, Paul Ord and 4 others
PMID 39581690WHAT IT FOUND
Standard incontinence questionnaires are often unusable for adults with intellectual disabilities due to complex wording and high rates of 'don't know' responses.
Open-ended questions and accessible tools are needed to accurately identify toileting issues and avoid diagnostic overshadowing.
Key findings
01Standard questionnaires like the IPSS proved problematic because questions were too difficult to understand or required subjective reporting, leading to high rates of 'don't know' responses.
02Open-ended questions identified ten additional toileting issues not captured by standard checklists, including refusing to wear pads, anxiety around voiding, and fear of falling.
03The majority of participants (86%) had previously been continent and developed incontinence during adulthood, contradicting assumptions that incontinence is inherent to intellectual disability.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
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What it does not show
The sample size was very small (22 adults) and exploratory, limiting the generalisability of the findings. Standard questionnaires were not validated for this population, leading to unreliable data and high 'don't know' rates. Only six participants completed bladder scans, so the prevalence of post-void urine retention could not be accurately determined. Weight was not measured, so obesity as a risk factor for incontinence could not be assessed.
Declared interests
The authors declared no conflicts of interest. The study was supported by non-U.S. government funding.
The easy way to misread this
Do not assume that low scores or 'don't know' responses on standard incontinence questionnaires indicate a lack of symptoms. These tools are often linguistically and cognitively inaccessible to adults with intellectual disabilities, leading to under-reporting. Use open-ended questions and involve supporters to get an accurate picture of toileting issues.