Introduction

Urinary (UI) and fecal (FI) incontinence are common secondary health conditions among young adults with spina bifida (YASB). Large scale studies report past month UI prevalence between 50% and 75% and past month FI prevalence between 41% and 55% [1]. Many YASB report both UI and FI in the past month [2]. Experiencing actual UI or FI and/or worrying about possible UI or FI can generally interfere with YASB’s participation in different activities of daily living (ADL) [3–5]. ADL are routine but essential tasks that individuals must be able to perform without assistance in order to be able to live independently [6]. People born with SB now have a lifespan approaching healthy populations, [7] meaning that YASB will live with UI and FI for several decades. Because of this increased lifespan, SB care guidelines now recommend that YASB learn to self-manage as many ADL as possible, as early as possible [8,9]. Maximizing ADL participation as YASB live amidst actual incontinence or worry about possible incontinence offers an important means for them to integrate themselves – even for YASB who are partially or completely dependent on caregivers – more fully into society at large [9]. In addition, greater ADL independence could facilitate the transition to adult care for some YASB [10] and is likely to bolster health related quality of life (HRQoL) for all YASB [11]. As with many other chronic illnesses, both increased independence and increased HRQOL are central therapeutic goals for YASB.

Providing effective support to YASB to reduce ADL avoidance requires accurately capturing what constitutes “clinically significant” avoidance in daily life. Clinical experience and prior research indicate that urinary and fecal incontinence vary not only between individuals, but also within the same individual across days [2,12–15]. Yet, fundamental questions about daily experiences needed to support clinical decision making – for example, how often does ADL avoidance occur in daily life, and which activities are most often avoided? Do these factors differ between UI and FI, whether an individual experiences actual incontinence or only worries about incontinence that may but does not occur, and do they differ depending on the context of the day? – remain unaddressed in the extant literature. Moreover, our past cross-sectional work suggests that objective aspects of UI and FI are independently associated with lower HRQoL [1,16,17], it remains unclear whether higher baseline HRQoL buffers against daily activity avoidance, or whether repeated avoidance in daily life contributes to subsequent reductions in HRQoL. Capturing these day-level experiences is therefore essential for truly personalized continence care, because interventions to address ADL avoidance must be adaptable not only to which activities are avoided and when avoidance occurs, they also must acknowledge when how these patterns change over time [12]. Notably, individualized approaches that focus on these shifts been identified as a research priority by people living with spina bifida themselves [18].

In the current paper, we use ecological momentary assessment (EMA) to gather these necessary data. Current clinical practice asks YASB to self-summarize incontinence experiences over long periods of time [2]. These static estimates can be prone to recall bias, and they often obscure potentially important between-person differences in how ADLA is experienced [19–22]. Interventions based on these data tend towards “one size fits all,” which may not meet all ASB needs. For example, a clinician who see that two YASB report the same number of ADL activities avoided may falsely assume the same therapies will be effective for them, even though the circumstances surrounding the avoidance may be very different for each YASB. The most effective patient-centered interventions are those tailored from the experiences of YASB themselves. EMA is a prospective – or forward looking – person-centered data collection approach that reduces this measurement bias through brief-but-repeated “in the moment” reports of YASB’s daily experiences (e.g., ADL avoidance due to worry about or actual UI or FI) and the context (e.g., mood or feelings about incontinence) in which they occur [23]. Over time, these repeated snapshots coalesce to provide a more accurate portrait of ADLA occurrence in real life [24]. By identifying when activity avoidance occurs, which activities are affected, and whether avoidance reflects actual incontinence or anticipatory worry, EMA-derived data could enable more individualized, participation-focused management than is possible with global symptom severity measures alone. Excellent reviews of EMA for overall health behavior can be found in Persky, et. al, 2022 [25] and Morris et. al, 2020 [26]. A review of the advantages of EMA use in the SB population is available in Hensel et. al, 2023 [2], Szymanski et. al, 2024 [12], or Hensel et. al, 2025 [27].

Accordingly, the primary objectives of our paper were to provide preliminary data on:

1. How often YASB avoid ADL when they either experience actual UI and/or FI or when they are worried about possible UI and/or FI (Objective 1a) and the most commonly avoided activities in these situations (Objective 1b);
2. Associations between daily ADL avoidance and daily affect or incontinence anxiety (Objective 2);
3. Association between beginning-of-study HRQoL and daily ADL avoidance, as well as between daily ADL avoidance and end-of-study HRQoL (Objective 3).

Methods

Study design and participants

Participants were a young adults 18−27 years (N = 23; 26.1% of all study-participants [N = 88]) in a larger 30-day study (R21DK121355) study examining the feasibility of using EMA to understand daily incontinence experiences among adults with SB. All participants completed end-of-day EMAs that assessed UI- and FI-specific characteristics, including any ADL avoidance, and if relevant, the specific activities avoided. Additional methodological details in Hensel et. al, 2023 [2] and Szymanski et. al, 2024 [12]. The larger project was approved by the Institutional Review Board of Indiana University (#1907916729), and achieved excellent retention (97.5%), EMA completion (95.8%), data accuracy (98.6%). Participants rated acceptability high (>90% enjoyed the study, found protocol easy, felt supported, would participate again). Completion was not associated with either demographic characteristics or any health history, including incontinence. While we observed no reactivity effects in data completion, there were small changes in UI reporting (−2.1%) and positive mood (+1.4%) over the 30 days [2,12]. Participant data are available in Table 1.

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Table 1. Demographic and background characteristics of young adults with Spina Bifida.

https://doi.org/10.1371/journal.pone.0341057.t001

Results

Overall patterns

Overall daily urinary and fecal incontinence frequency.

About six out of every ten days were associated with a report of any type of incontinence (57.5%; 370/643). The majority of these reports (63.7%: 236/370) were UI only. About one in ten (9.3%: 22/370) were FI only, and a third (30.2%: 112/370). Any UI was reported on 54.1% (348/643) of all study days. FI was noted on 20.8% (134/643) of all study days (p < .001).

Objective 1a – Describe the frequency of daily ADL avoidance among YASB when they actually experienced UI or FI and ADL avoidance on non-incontinence days when they were worried about possible UI or FI

Urinary incontinence.

YASB reported avoiding ADL with relatively the same frequency – about eight percent – on days when they were worried about possible UI (8.3%: 25/295) as they did on days when they actually experienced UI (8.9%: 31/348; p = 0.546). This suggests slightly less than one out of every ten days with a real or perceived concern about UI involved the avoidance of at least one activity. As shown in Table 2, the median number of ADL avoided per day for both sources were one, ranging between no activities and two activities avoided around worry about UI and ranging between no activities and three activities avoided when UI occurred.

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Table 2. Daily reports of activity of daily living avoidance with actual incontinence or worry about possible incontinence among young adults with Spina Bifida.

https://doi.org/10.1371/journal.pone.0341057.t002

Fecal incontinence.

YASB noted ADL about five times less frequently on days when they were worried about FI (3.5%: 18/509) versus days when they actually experienced FI (20.2%: 27/134; p = 0.002). These latter data suggest that one out of every five days with FI also involved activity avoidance. As shown in Table 2, the median number of ADL avoided per day for actual FI and worry about FI sources were one, ranging between no activities and two activities avoided around worry about FI and ranging between no activities and four activities avoided when FI occurred.

Supplementary analyses.

We explored different comparisons across worry types. On 112 days when YASB reported both actual UI and FI, 12.5% (14/112) were associated with ADL avoidance for UI only and 7.1% (8/112) involved avoiding ADL around both UI and FI. No days (0.0%) were ADL avoidance for FI only (p = 0.0125 across the three groups). On 273 days when neither UI nor FI were reported, 1.8% (5/273) were concurrent with avoiding activities for worry about UI and 10.2% (25/273) for worry about FI only. No days had activity avoidance around worry for both UI and FI (p = 0.664 across the three groups).

Daily ADL avoidance was significantly more frequent when YASB reported actual FI than when they reported actual UI (p < 0.001). Conversely, daily ADL avoidance was significantly more frequent on days when YASB worried about UI as compared to when they worried about FI (p < 0.001).

Objective 1b – Describe the most commonly ADL YASB avoid they either experienced UI or FI or when they were worried about possible UI or FI

Table 2 displays the frequency of both basic and instrumental ADL avoidance, by actual incontinence and worry about incontinence. Of basic ADL, the most broadly endorsed activities avoided were eating and drinking. Of instrumental activities, the most commonly avoided activities were spending time with family or friends. Avoidance of eating a meal or snack was most frequent on days with actual UI (44.0%), with actual FI (55.6%) or worry about FI (55.6%). Drinking was most commonly avoided on days with worry about possible UI (88.0%) or with actual UI (67.7%), with worry about FI (44.0%) or with actual FI (22.2%). YASB reported avoiding exercises the most frequently when they were worried about UI (44.0%) (actual UI: 19.3% and actual FI: 18.5%). Finally, spending time with family and friends was most common on days with either worry about possible FI (27.8%) or with worry about possible FI (33.3%).

Objective 2 – Understand preliminary median differences in positive mood, negative mood and incontinence anxiety on days with and without any ADL.

As shown in Table 3, median UI anxiety was significantly higher on days when YASB reported ADL avoidance (vs. no avoidance) due to either worry about possible UI or experiencing actual UI (both p < .001). Median FI anxiety was also significantly higher on days when YASB reported ADL avoidance (vs. no avoidance) when they worried about possible FI or when they experienced actual FI (both p < .001). Negative mood was significantly higher on days when YASB avoided ADL both due to actual UI and actual FI (both p < .001) and positive mood was significantly lower on days when youth avoided ADL because they were worried about possible FI (p = .003).

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Table 3. Daily affect, incontinence anxiety and activity of daily living avoidance among young adults with Spina Bifida.

https://doi.org/10.1371/journal.pone.0341057.t003

Objective 3 – Association of ADL with Health Related Quality of Life

Higher HRQoL at the start of the study was significantly correlated with a lower number of days during the study on which YASB avoided ADL related to actual UI (Spearman’s Rank [SR] = −0.226; p < .001), actual FI (SR = −0.163; p = 0.004) or worry about FI (SR = −0.190; p < .001). Starting HRQoL was not correlated with avoidance due to worry about UI. Put another way, higher HRQoL before beginning the study seemed to buffer – or reduce – the frequency of activity avoidance during the 30 days.

A higher number of days during the study on which YASB avoided ADL due to actual UI (SR = −0.309; p < .001) or actual FI (SR = −0.165; p = 0.003) was significantly correlated with lower HRQoL at the end of the study. Similarly, YASB who reported a higher number of ADL avoidance days due to worry about UI (SR = −0.214; p < .001) or worry about FI (SR = −0.335; p < .001) during the study reported significantly lower HRQoL at the end of the study. Put another way, increased activity avoidance – for whatever motivation – over the 30 days reduced their HRQoL at the end of the month.

Discussion

A central goal of caring for YASB is understanding any “clinically significant” impact incontinence may have on the function in their lives, including avoiding important daily activities. In the current paper, we used EMA to capture these avoidance events with greater precision to how YASB experience them in “real life.” Ours is the first study to contribute preliminary understanding of how often ADL avoidance occurs in the context of worry about incontinence or actual incontinence, what activities YASB most commonly avoid, and explore the impact of mood, incontinence anxiety and HRQoL on activity avoidance. While previous studies broadly suggest that UI and FI create barriers to ADL participation [3–5], our data indicate that this daily avoidance may be even more heterogenous that previously thought. While additional data will be needed to optimize EMA use in this population, below we highlight some preliminary examples of actionable insights that could enhance targeted clinical decision making rather than replacing routine assessment.

The first important idea is that both the overall occurrence of ADL avoidance and the specific activities YASB avoided varied depending on the both the incontinence source (e.g., UI vs. FI) and the avoidance source (e.g., worry about possible vs. actual incontinence). In other words, a dry day is not a day free of the negative effects of incontinence even though no incontinence occurs. While these statements may seem obvious, it is important to consider that most standardized clinical instruments screen for a single “usual” or “typical” actual incontinence outcome and do not capture worry about possible incontinence on days it does not occur [33,34]. Such an approach is unlikely to capture the fluctuation we observed over a 30-day period and ignore the effects of worry about potential incontinence. For example, if we consider that the median number of ADL avoided per day – one activity – is the same across incontinence source and avoidance source, we could falsely assume that avoidance consistently occurs at low levels. However, a closer look at the data would suggest important nuances, such as that YASB avoid vital basic ADL like eating and drinking frequently, or that YASB often forgo exercise with worry about UI, but not with actual UI, or that YASB avoid social time with family and friends about six times as often when they have actual FI as compared to when they have actual UI. These pieces of information are likely important inputs for more personalized continence care [12]. While the ideal EMA cadence and collection time to support clinical decision making remains to be established, this is an area worthy of further investigation. The opportunity to increase life participation – if even on a single activity – is important for all YASB, regardless of function level [10,11].

We observed that daily subjective factors were associated with activity participation. Specifically, median daily negative mood and daily incontinence anxiety were significantly higher when YASB reported that they avoided activities in every incontinence situation: when they were worried about possible UI, when they were worried about FI, when they reported UI and when they reported FI. While studies suggest that depression and anxiety are common in people with SB, [35] the role of affect in the improvement and exacerbation of incontinence symptoms remains unknown. The idea of targeting daily emotions alongside treating incontinence itself – perhaps in real time as part of just-in-time interventions – is an intriguing patient-centered approach yet unused in clinical settings. It may also be possible to include strengthening emotional management as part of self-management strategies [36]. Clinicians may consider screening for mood to open discussions about ADL avoidance [37].

Finally, our data suggested a preliminary association of cumulative ADL during the study with both beginning- and end-of-study reports of HRQoL. Specifically, higher HRQoL at the beginning of the study was significantly associated with lower ADL avoidance during the study, and fewer days of ADL during the study were associated with significantly higher HRQoL at the end of the study. On the one hand, these findings could suggest that building HRQoL serves as an important buffering effect to ongoing ADL avoidance in daily life. On the other hand, it could also be that lower activity avoidance reflects better condition management, increasing HRQoL. Disentangling the mechanism of these effects and their iterative clinical potential will be the focus of our future research, particularly in terms of how HRQoL could be leveraged to manage both short- and long-term well-being in those with SB.

Conclusion

This study is the first to capture a snapshot of what activity avoidance around incontinence – due to either worry about possible incontinence or actual incontinence – among YASB. Our data suggest that avoidance experiences are likely more varied than originally thought, and perhaps more importantly, have associations with both daily affect and incontinence anxiety as well as longer term HRQoL. Longer studies will be certainly needed to both capture a wider section of YASB life, and to establish the ideal data volume to enhance clinical decision making, Nevertheless, we argue that the user-centered and minimally invasive structure of EMA is well suited for gathering data from all people with SB about how they navigate daily life with incontinence. In addition to symptom reporting, EMA could do double duty as a platform to encourage patient-clinician communication and to facilitate the delivery of ongoing, personalized therapies [39].

Acknowledgments

We are grateful to the participants of this study for providing their information, and to Pat Brooks for outstanding support of our participants during the study.

Consent for publication

As part of the informed consent process, all participants provided consent for their anonymized data to be used in any publication resulting from the study.