Abstract

Background Studies suggest that young adults with spina bifida (YASB) often avoid important daily activities (ADL) due to urinary (UI) and fecal (FI) incontinence, but no research has prospectively examined how often ADL avoidance occurs, or the context in which it occurs. We used ecological momentary assessment (EMA) over 30 days to describe the frequency of avoidance, the activities YASB most commonly avoid, and the preliminary association of daily avoidance with affect, incontinence anxiety and health-related quality of life (HRQoL).

Method We analyzed a subsample of YASB participants (18 – 27 years; N=23 of total 88 participants) who completed a larger 30-day prospective EMA study examining the daily prevalence and context of UI and FI in adults with SB. Participants completed an end-of-day EMA tracking daily ADL avoidance on days when they were worried about possible UI or FI and on days when the had actual UI or FI. Additional day-level measures were affect and incontinence anxiety. HRQoL was reported in beginning- and end-of-study surveys.

Results YASB contributed 643 total EMAs; 57.5% had any incontinence. ADL avoidance was most frequent with actual FI (20.5%) and least frequent with worry about FI (3.5%, p=0.02) (UI worry: 8.3; actual UI: 8.9%, p=0.546). The most common basic ADL avoided were eating, drinking and spending time with family/friends. Negative mood and incontinence anxiety were significantly higher on days with all types of avoidance. Higher baseline HRQoL was associated with fewer in-study ADLs avoided, which were in turn associated with higher end-of-study HRQoL.

Discussion YASB avoid key activities of daily living (e.g., eating, drinking, seeing family/friends) both when they worry about possible incontinence that may but does not occur, and when they experience actual incontinence. In other words, a dry day is not a day free of the negative effects of incontinence. ADL avoidance patterns vary between UI and FI. Tailored interventions addressing actual incontinence and worry about possible incontinence incorporating daily mood or incontinence anxiety can potentially minimize ADL avoidance and its impact on long-term HRQoL.

Discussion and Implications YASB avoid key activities of daily living (e.g., eating, drinking, seeing family/friends) both when they worry about possible incontinence and when they experience actual incontinence. Tailored intervention may consider addressing daily mood or incontinence anxiety to minimize any ADL avoidance in the short term as a means to improve HRQoL in the long term.

Competing Interest Statement

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

Funding Statement

This study 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.

Author Declarations

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The IRB of Indiana University gave ethical approval for this work.

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Data Availability

Raw data files and codebooks are stored with the Open Science Framework (https://osf.io/gefqx/)

AbbreviationsSBspina bifidaEMAecological momentary assessmentUIurinary incontinenceFIfecal incontinence ADL = activity of daily living