Division of Pediatric Urology, Riley Hospital for Children at Indiana University Health, Indianapolis, IN, USA.
Division of Pediatric Urology, Riley Hospital for Children at Indiana University Health, Indianapolis, IN, USA.
J Pediatr Urol. 2018 Jun;14(3):279.e1-279.e8. doi: 10.1016/j.jpurol.2018.02.021. Epub 2018 Mar 21.
Despite devoting many resources to managing urinary and fecal incontinence (UI and FI) in children with spina bifida (SB), it remains unclear whether either is associated with lower health-related quality of life (HRQOL). We sought to determine the impact of UI and FI on HRQOL in this population.
Children with SB (8-17 years) living in the United States were surveyed online and in SB clinics (2013-15). We evaluated incontinence over the previous 4 weeks using a UI dry interval (<4 h, ≥4 h), FI clean interval (<1 week, ≥ 1 week), and self-reported amount of UI and FI (for each: a lot, medium, a little, none). HRQOL was assessed with QUALAS, a validated SB-specific instrument. Linear regression was used.
The mean age of 298 children was 12.5 years (52.0% male). Overall, 73.1% had UI, 52.3% had FI, and 43.6% had both. Adjusting for concurrent UI and FI, any UI was associated with lower HRQOL in 14-17 year olds (p < 0.0001) and 10-13 year olds (p = 0.048), but not 8-9 year olds (p = 0.98) (Figure). All age groups reported lower HRQOL with FI (p ≤ 0.0001). On multivariate analysis, UI and FI incontinence intervals were not associated with lower HRQOL for any age group (p ≥ 0.58 and p ≥ 0.10, respectively). Higher quantities of UI were associated with ever-lower HRQOL, particularly in 14-17 year olds (p ≤ 0.02). Any quantity of FI was associated with lower HRQOL in all ages. The findings did not change significantly on exploratory analysis correcting for demographic and clinical variables.
We report the first evidence that incontinence matters to children and adolescents with SB. Being a cross-sectional study, we were unable to track HRQOL over time. A prospective study is required to assess if HRQOL impact of UI indeed changes as a child grows up and if improving incontinence with treatments improves HRQOL. Findings are similar to those reported in adults with SB and suggest that the concept of "social continence" based on time interval has no HRQOL relevance in children, adolescents or adults with SB.
UI is negatively associated with HRQOL in children with SB in an age-dependent fashion: starting in 10 year olds and increasing until 14 years. FI correlates with lower HRQOL regardless of age. Similar to findings in adults with SB, HRQOL is lower with increasing amounts of UI and not the length of a dry interval. FI impacts HRQOL uniformly, regardless of frequency or amount.
尽管在管理脊髓脊膜膨出（SB）患儿的尿失禁（UI）和粪失禁（FI）方面投入了大量资源，但 UI 和 FI 是否与较低的健康相关生活质量（HRQOL）相关仍不清楚。我们旨在确定 UI 和 FI 对该人群 HRQOL 的影响。
在美国，8-17 岁的 SB 患儿通过在线和 SB 诊所进行了调查（2013-15 年）。我们在过去 4 周内通过 UI 干燥间隔（<4 小时，≥4 小时）、FI 清洁间隔（<1 周，≥1 周）以及自我报告的 UI 和 FI 量（每种情况：很多、中等、少许、没有）来评估失禁情况。使用 QUALAS 评估 HRQOL，这是一种经过验证的 SB 专用工具。采用线性回归进行分析。
298 名儿童的平均年龄为 12.5 岁（52.0%为男性）。总体而言，73.1%有 UI，52.3%有 FI，43.6%同时存在 UI 和 FI。在同时考虑 UI 和 FI 的情况下，任何 UI 与 14-17 岁儿童（p<0.0001）和 10-13 岁儿童（p=0.048）的 HRQOL 降低相关，但与 8-9 岁儿童（p=0.98）无关（图）。所有年龄组均报告 FI 与较低的 HRQOL 相关（p≤0.0001）。多变量分析显示，对于任何年龄组，UI 和 FI 失禁间隔均与较低的 HRQOL 无关（p≥0.58 和 p≥0.10）。UI 量越高，与 HRQOL 降低的相关性越大，尤其是在 14-17 岁儿童中（p≤0.02）。任何 FI 量均与所有年龄段的 HRQOL 降低相关。在探索性分析中，通过对人口统计学和临床变量进行校正，结果并未发生显著变化。
我们首次报告了失禁对 SB 患儿的重要性。由于这是一项横断面研究，我们无法追踪 HRQOL 的随时间变化。需要前瞻性研究来评估 UI 的 HRQOL 影响是否确实会随着儿童的成长而改变，以及治疗改善失禁是否会改善 HRQOL。研究结果与 SB 成人中的报告相似，表明基于时间间隔的“社交控便”概念在 SB 儿童、青少年或成人中与 HRQOL 无关。
UI 与 SB 患儿的 HRQOL 呈年龄依赖性负相关：从 10 岁开始，直到 14 岁增加。FI 与较低的 HRQOL 相关，与年龄无关。与 SB 成人中的发现相似，UI 量增加与干燥间隔长度无关，HRQOL 降低。FI 均匀地影响 HRQOL，与频率或量无关。
