与健康相关的生活质量与膀胱和肠道功能障碍的关系:需要新的以患者为中心的调查问卷

Hannah Dillon, B. Whittam, Richard Rink, M. Kaefer, Kirstan D Meldrum, Joshua Roth, Pankaj Dangle, Yifan Meng, Jeremy Koehlinger, R. Misseri, Konrad Szymanski
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摘要

背景与假设:与同龄人相比,患有尿失禁或尿频等排尿功能障碍(VD)的儿童的生活质量(QOL)可能较低。可用于此类人群的 QOL 问卷存在一些局限性。PinQ 是一种针对膀胱的、与健康相关的 QOL 问卷,但它在开发过程中并未征求利益相关者的意见,也未能将症状与 QOL 区分开来。Kidscreen-10 是一份通用的 QOL 问卷。我们的目的是在一项横断面研究中了解使用现有工具获得的 QOL 与 VD 严重程度的相关性。我们假设,症状的巨大差异会导致膀胱特异性 QOL 的巨大差异,但通用 QOL 的差异较小。研究方法我们在一家儿科泌尿科诊所招募了 8-18 岁患有 VD 的儿童(2023 年 6 月至 7 月)。尿失禁包括日间尿失禁、遗尿、尿频、尿急和排尿困难。我们排除了严重发育迟缓、泌尿系统解剖异常或有泌尿系统手术史的儿童。我们收集了人口统计学资料、症状(温哥华功能障碍排尿症状评分,DVSS)和 QOL(PinQ 和 Kidscreen-10)。问卷得分与以往研究的加权平均值进行了比较。我们计算了斯皮尔曼相关性以及与报告的 20 分 DVSS 评分范围相对应的 QOL 差异。结果:共有 20 名中位数年龄为 10 岁的儿童(11 名女孩)参加(表 1)。DVSS 平均分为 14 分,与之前的研究结果相似(加权平均分:15 分)。PinQ 分数与 DVSS 分数呈中度正相关(r = 0.37),20 分的 DVSS 差异对应于 24% 的 PinQ 分数差异(图 1)。Kidscreen-10 分数与 DVSS 分数呈中度负相关(r = -0.33),20 分的 DVSS 差异对应于 12% 的 Kidscreen-10 分数差异(图 2)。结论以前公布的 QOL 问卷有很大的局限性,限制了它们在 VD 患者护理中的临床应用。我们需要一种新的、以患者为中心的、高度特异性和敏感性的健康相关 QOL 问卷。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Health-Related Quality of Life Correlates with Bladder and Bowel Dysfunction: the Need for a New Patient-Centered Questionnaire
Background and Hypothesis: Children with voiding dysfunction (VD), such as incontinence or urinary frequency, may report lower quality of life (QOL) compared to their peers. QOL questionnaires which could be used in this population have several limitations. PinQ is a bladder-specific, health-related QOL questionnaire, but it was developed without stakeholder input and fails to separate symptoms from QOL. Kidscreen-10 is a generic QOL questionnaire. We aimed to understand how QOL captured using existing instruments correlates with VD severity in a cross-sectional study. We hypothesized that large differences in symptoms would correspond with large differences in bladder-specific QOL but small differences in generic QOL. Methods: We recruited children 8-18 years old with VD at a pediatric urology clinic (June-July 2023). VD included daytime incontinence, enuresis, frequency, urgency, and dysuria. We excluded children with severe developmental delay, anatomical urological abnormalities, or history ofurologic surgery. We captured demographics, symptoms (Vancouver Dysfunction Voiding Symptom Score, DVSS), and QOL (PinQ and Kidscreen-10). Questionnaire scores were compared to weighted means from previous studies. We calculated Spearman correlations and QOL differences corresponding with the reported 20-point range of DVSS scores. Results: Twenty children (11 girls) at a median age of 10 years old participated (Table 1). Mean DVSS score was 14, similar to previous studies (weighted mean: 15). PinQ scores had a moderate positive correlation with DVSS scores (r = 0.37) with a 20-point DVSS difference  corresponding to a 24% difference in PinQ scores (Figure 1). Kidscreen-10 scores had a moderate negative correlation with DVSS scores (r = -0.33) with a 20-point DVSS difference corresponding to a 12% difference in Kidscreen-10 scores (Figure 2). Conclusions: Previously published QOL questionnaires have significant limitations, limiting their clinical use in the care of patients with VD. A new, patient-centered, highly specific, and sensitive healthrelated QOL questionnaire is needed.
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