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.
BACKGROUND: 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). METHODS: 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. RESULTS: 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). DISCUSSION: 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. CONCLUSION: 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.
背景: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)。 方法: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。 结果: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)。 讨论: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。 结论: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。
Cochrane Database Syst Rev. 2024-10-29
J Pediatr Urol. 2024-6
J Pediatr Urol. 2018-3-21
Cochrane Database Syst Rev. 2025-3-11
J Pediatr Urol. 2024-6
J Pediatr Urol. 2023-6
J Adolesc Health. 2022-7
J Pediatr Rehabil Med. 2020