BACKGROUND: No studies have evaluated the day-to-day variations in urinary incontinence (UI) and fecal incontinence (FI) among adults with spina bifida (SB). We aimed to 1) describe variations in UI/FI over 30 days, 2) assess factors associated with the negativity effects of incontinence, and 3) correlate incontinence negativity and health-related quality of life (HRQOL) among adults with SB (exploratory).
METHODS: Adults with SB participated in a larger 30-day smartphone-based ecological momentary assessment (EMA) study of well-being and incontinence. We analyzed baseline demographics, temporal variables (baseline UI/FI, incontinence, and negativity on days prior), and incontinence episode-specific variables (number of daily episodes, incontinence interval, quantity). Validated questionnaires were used: Urinary and Fecal Incontinence Negativity (UIN, FIN) and the Health Relationships domain of QUALAS-A (HRQOL). Scores range 0-100 (0=lowest outcome). Mixed-effects multi-linear regression was used.
RESULTS:Eighty-nine adults participated at a median age of 33 years old (71% female, 53% shunted, 49% community ambulators). Participants contributed 2578 total diary days: 61% were associated with any incontinence (41% UI only, 6% FI only, 13% both).
Eighty-two adults reported UI on a median of 16 days, but experiences varied: 6% had a single episode, while 33% had UI on 28-30 days (Summary Figure). Median UIN was 21. On multivariate regression, higher UIN was reported by women, those without baseline FI, with higher median UIN on days prior, greater number of daily UI episodes, shorter incontinence intervals and higher UI quantity (p<=0.01).
Seventy adults reported some FI at a median of 5 days, but experiences varied: 11% had a single FI episode, while 31% had FI on 10 or more days. Median FI impact was 34, higher than for UI (p<0.001). On multivariate regression, higher FIN was reported by women, community ambulators, those with lower baseline HRQOL, fewer FI episodes on days prior, more UI episodes on days prior and that day, and higher UI quantity (p<=0.049). FIN was correlated with end-of-study HRQOL (p=0.002).
CONCLUSIONS:Day-to-day experiences of UI and FI vary among adults with SB across multiple dimensions. Negativity about incontinence when it occurs varies not only based on individual- and episode-specific characteristics, but also on incontinence in the preceding days. Operationalizing these insights into potential clinical interventions warrants further investigation.
