The accuracy of self-reported urinary incontinence (UI) and fecal incontinence (FI) among adults with spina bifida (SB) is unknown. We aimed to quantify the accuracy of self-reported recall incontinence in the last 4 weeks using prospective diary data. Adults with SB were enrolled via patient advocacy groups in a larger 30-day smartphone-based ecological momentary assessment study of daily well-being and incontinence. We examined agreement between yes/no questions on exit questionnaires ("In the last 4 weeks, did you leak any urine and get your underwear, pads, pull-ups or disposable underwear wet?") and 30-day diaries. Collected data included a non-validated 4-item UI Negativity scale (UIN: 0-100, 0=no impact). Inter-rater reliability was assessed with Cohen's kappa (>0.60=substantial). FI was analyzed similarly. Sub-groups were too small for statistical analysis. Median age of 88 adults was 35 years old (70% female, 53% shunted, 71% community ambulators). Among 81 adults reporting UI in the last month, 79 (98%) had diary-documented UI (UI agreement), 2 (2%) did not (Summary Table). Among 7 adults reporting no UI in the last month, 5 (71%) did not record UI in their diaries (agreement in no UI), 2 (29%) did. Both adults reporting no UI on exit questionnaires, despite contrary diary data, experienced single UI episodes (negativity: 0 and 6). In contrast, the UI agreement group recorded UI on median 18 days (median negativity: 22). Sensitivity of the recall UI question was 0.98 (specificity 0.71, kappa 0.69). Among 66 adults reporting FI in the last month, 65 (98%) had diary-documented FI (FI agreement), 1 (2%) did not. Among 22 adults reporting no FI in the last month, 17 (77%) did not record FI in their diaries (agreement in no FI), 5 (23%) did. Five adults reporting no FI on exit questionnaires, despite contrary diary data, experienced a median single episode (median negativity: 8). In contrast, the FI agreement group recorded FI on median 5 days (median negativity: 31). Sensitivity of the recall FI question was 0.93 (specificity 0.94, kappa 0.81). Results were unchanged when analyzing the first and last 28 days of data. Sensitivity/specificity of single incontinence questions approach those reported for women with UI but without SB. Diaries may best serve SB adults with bothersome incontinence. Self-reported incontinence accurately and reliably captures UI and FI among adults with SB. It may minimize less bothersome incontinence, supporting its use in screening for clinical practice and research.
Read full abstract