Szymanski Konrad M, Misseri Rosalia, Hensel Devon J
Division of Pediatric Urology, Riley Hospital for Children at IU Health, Indianapolis, IN, USA.
Division of Pediatric Urology, Riley Hospital for Children at IU Health, Indianapolis, IN, USA.
J Pediatr Urol. 2025 Apr;21(2):411-419. doi: 10.1016/j.jpurol.2024.11.001. Epub 2024 Nov 7.
No studies have evaluated the day-to-day variations in urinary incontinence (UI) and fecal incontinence (FI) among adults with spina bifida (SB). We aimed to 1) describe variations in UI/FI over 30 days, 2) assess factors associated with anxiety about incontinence, and 3) correlate anxiety about incontinence and health-related quality of life (HRQOL) among adults with SB (exploratory).
Adults with SB participated in a larger 30-day smartphone-based ecological momentary assessment (EMA) study of well-being and incontinence. We analyzed baseline demographics, temporal variables (baseline UI/FI, incontinence, and anxiety on days prior), and incontinence episode-specific variables (number of daily episodes, incontinence interval, quantity). Urinary and fecal incontinence-related anxiety (UIA/FIA) was measured on a 5-point Likert scale ("How anxious were you because of urine/stool leaks today?"), HRQOL with QUALAS-A (scores range 0-100, 0 = lowest HRQOL). Mixed-effects, random intercept ordinal and linear regression was used.
Eighty-nine adults participated at a median age of 33 years old (71 % female, 53 % shunted, 49 % community ambulators). Participants contributed 2578 total diary days: 61 % were associated with any incontinence (41 % UI only, 6 % FI only, 13 % both). Eighty-two (92 %) adults reported UI on a median of 16 days, but experiences varied: 6 % had a single episode, while 33 % had UI on 28-30 days (Summary Figure). Seventy adults (79 %) reported FI on a median of 5 days, less frequently than UI (p < 0.001), but experiences varied: 11 % had a single FI episode, while 31 % had FI on 10 or more days. Fewer participants reported any UIA than FIA (50 % vs. 72 %, respectively, p < 0.001). On multivariate regression, (1) higher UIA was reported by individuals with higher baseline UIA, higher UIA on days prior, multiple daily episodes and higher UI quantity (p ≤ 0.02), while (2) higher FIA was reported by those with lower baseline HRQOL, fewer FI episodes on days prior, higher FIA on days prior, and higher UI quantity (p ≤ 0.02). FIA was correlated with lower end-of-study HRQOL (p = 0.03).
Instances of incontinence are not uniform experiences. Their effects vary with factors beyond the actual episode. This suggests novel potential points of intervention to improving long-term HRQOL among people with incontinence.
Day-to-day experiences of UI and FI vary among adults with SB across multiple dimensions. Anxiety 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.
尚无研究评估脊柱裂（SB）成人患者尿失禁（UI）和大便失禁（FI）的日常变化情况。我们旨在：1）描述30天内UI/FI的变化；2）评估与尿失禁焦虑相关的因素；3）在SB成人患者中探讨尿失禁焦虑与健康相关生活质量（HRQOL）之间的相关性（探索性研究）。
SB成人患者参与了一项为期30天、基于智能手机的关于幸福感和失禁情况的生态瞬时评估（EMA）大型研究。我们分析了基线人口统计学特征、时间变量（基线UI/FI、失禁情况以及之前几天的焦虑程度）以及失禁发作的特定变量（每日发作次数、失禁间隔时间、失禁量）。采用5点李克特量表测量与尿失禁和大便失禁相关的焦虑（UIA/FIA）（“由于今天尿液/粪便泄漏，您有多焦虑？”），使用QUALAS - A量表评估HRQOL（得分范围0 - 100，0 = 最低HRQOL）。采用混合效应、随机截距有序和线性回归分析。
89名成人参与研究，中位年龄33岁（71%为女性，53%有分流，49%能在社区行走）。参与者共提供了2578个日记日：61%与任何失禁情况相关（仅UI占41%，仅FI占6%，两者皆有占13%）。82名（92%）成人报告有UI，中位天数为16天，但经历各不相同：6%仅有一次发作，而33%在28 - 30天有UI（总结图）。70名（79%）成人报告有FI，中位天数为5天，比UI频率低（p < 0.001），但经历也各不相同：11%仅有一次FI发作，而31%在10天或更长时间有FI。报告有UIA的参与者少于FIA（分别为50%和72%，p < 0.001）。多变量回归分析显示，（1）基线UIA较高、之前几天UIA较高、每日发作多次以及UI量较大的个体报告的UIA较高（p≤0.02），而（2）基线HRQOL较低、之前几天FI发作较少、之前几天FIA较高以及UI量较大的个体报告的FIA较高（p≤0.02）。FIA与研究结束时较低的HRQOL相关（p = 0.03）。
失禁情况并非一致的经历。其影响因实际发作之外的因素而异。这提示了改善失禁患者长期HRQOL的新的潜在干预点。
SB成人患者的UI和FI日常经历在多个维度上存在差异。失禁发生时的焦虑不仅因个体和发作的特定特征而异，还与前几天的失禁情况有关。将这些见解转化为潜在的临床干预措施值得进一步研究。
