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.
Many individuals with spina bifida (SB) spend decades of their lives coping with conditions like urinary (UI) and/or fecal (FI) incontinence, creating an urgent need for research that can accurately reflect the impact of daily experiences with UI and FI on individual well-being. The proposed study will be one of the first to use ecological momentary assessments (EMA) to obtain data from 50 young adults with spina bifida (ages 18-25) in order to assess daily occurrence, severity and bother of UI and FI, linking these variables to social, physical and mental well-being. The results of this feasibility study will provide the information necessary to design a larger intervention to support lasting, sustainable improvements in incontinence symptom management in those with SB.
