# Ecological momentary assessment to understand the impact of daily urinary and fecal incontinence on well-being among adults with spina bifida

> **NIH NIH R21** · INDIANA UNIVERSITY INDIANAPOLIS · 2020 · $195,520

## Abstract

Project Summary
Individuals with spina bifida (SB) often cope with decades of secondary health impairments,
including urinary (UI) and/or fecal incontinence (FI). Research generally links UI and FI to lower
social, physical and emotional well-being, but is limited by the use of retrospective and largely
cross-sectional measures. An urgent step in optimizing quality of life for those with SB is
building a clearer understanding of how individuals manage UI and FI in their daily lives.
The
long term goal to improve UI and FI symptom management, and in doing so, reduce disability
burden and increase quality of life in adults with SB.
The objective of this R21 application is to
test the feasibility of using EMA as a method to understand to more accurately understand
participants’ daily, real-world experiences with UI and FI, and the impact that these experiences
have on daily well-being. We will use repeated daily EMA assessments delivered on
smartphones daily over four weeks to assess occasions of UI and FI symptom experiences, and
link these to within-person fluctuations in well-being in a cohort of 50 young adults (18-25 years)
with SB. The rationale for the project is that EMA is a user-centered, minimally invasive method
that has been used to illuminate symptom experiences in other chronic illness populations – this
project is innovative because it is the first to use EMA to prospectively understand daily UI and
FI in the SB population, and needs feasibility testing prior to long-term evaluation. This research
study will pursue two specific aims: (1) Evaluate the feasibility of using EMA in a sample of
adults with SB, (2) Describe the daily variability of UI and FI symptom experiences and well-
being. For the first aim, we will examine participants’ compliance with study protocol, their data
completion, any reactivity in their data reporting and their acceptability of study approach. In the
second aim, we will examine within-person variability in EMA reports of UI and FI symptoms
(e.g. severity and bother) and link this variability to daily social (e.g. daily activities and social
interaction), physical (e.g. perceived health) and mental (e.g. higher stress, depressed mood,
anxiety and embarrassment) well-being. These data will provide strong preliminary data –
including refined recruitment and measurement practices, as well as effect sizes – necessary to
guide an R01 level, EMA-focused scalable intervention designed to support lasting, sustainable
improvements in incontinence symptom management in those with SB.

## Key facts

- **NIH application ID:** 10017967
- **Project number:** 5R21DK121355-02
- **Recipient organization:** INDIANA UNIVERSITY INDIANAPOLIS
- **Principal Investigator:** Devon J. Hensel
- **Activity code:** R21 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2020
- **Award amount:** $195,520
- **Award type:** 5
- **Project period:** 2019-09-15 → 2023-06-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10017967

## Citation

> US National Institutes of Health, RePORTER application 10017967, Ecological momentary assessment to understand the impact of daily urinary and fecal incontinence on well-being among adults with spina bifida (5R21DK121355-02). Retrieved via AI Analytics 2026-05-25 from https://api.ai-analytics.org/grant/nih/10017967. Licensed CC0.

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