Background: Urinary (UI) and fecal (FI) incontinence are prevalent secondary chronic conditions among young adults with spina bifida (YASB). UI and FI decrease daily functioning for YASB, but no research has prospectively examined characteristics of UI and FI among YASB. We used ecological momentary assessment (EMA) over 30 days to describe the prevalence, episode-specific characteristics and negativity associated with UI and FI among a cohort of YASB. Methods: Data were collected as part of a larger 30-day EMA study prospectively examining the daily prevalence and context of UI and FI in adults with SB. We drew an analytic sample of young adults (YASB) participants aged 18-27 years (N=23 [26.1% of all study-participants [N=88];). Participants completed an end-of-day EMA tracking the frequency, dry intervals, volume, activity avoidance, management, positive and negative mood, current UI (UIN) or FI (FIN) negativity, past UIN and FIN and past number of UI or FI events. Results: YASB contributed a 643 daily EMAs. Nearly 60% (370/643) of all daily entries was associated with a general report of incontinence (UI: 54.1% [348/643]; FI: 20.8% [134/643). Prevalence, episode-specific factors and negativity associated with UI and FI varied significantly from day-to-day. Higher UI frequency, shorter dry intervals, greater UI volume, needing management help, avoiding activities because of UI, higher past median UIN, higher negative mood and fewer past UI events were associated with higher daily UIN. Shorter FI dry intervals, higher past median FIN, higher negative mood and fewer past FI events were associated with higher daily FIN. Discussion: 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.

Dr. Hensel is a paid research consultant with For Goodness Sake, LLC.

This project was funded by a National Institute of Digestive and Kidney Disorders (NIDDK) (R21DK121355) to Drs. Hensel and Szymanski. The work presented here reflects the viewpoints of the authors and not necessarily those of NIDDK.

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