PedsQLTM 4.0 通用模块和疲劳模块在罗马尼亚炎症性肠病患儿中的适用性:试点研究。

Andreea Ioan, Mara-Ioana Ionescu, Catalin Boboc, Malina Anghel, Anca Andreea Boboc, Eliza Elena Cinteza, Felicia Galos
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摘要

儿科生活质量量表(PedsQL)是一种用于测量 2 至 18 岁儿童健康相关生活质量(HRQoL)的工具。本研究旨在调查罗马尼亚语版的两个 PedsQL 模块(通用核心量表和多维疲劳量表)在炎症性肠病(IBD)患儿中的可行性和可靠性。在我们诊所确诊患有 IBD 的儿童及其家长共填写了 26 份罗马尼亚语版 PedsQL 表,而健康儿童及其照顾者组成的对照组则填写了 86 份相同的在线表格。我们比较了对照组和受试者的总分和维度得分,以及年龄、性别、活动性疾病和非活动性疾病的差异。结果表明,受试者和对照组的 PedsQL 总分和总分存在差异,慢性 IBD 患儿的 HRQoL 较低,疲劳程度较高。研究发现,罗马尼亚语版本的儿童生活质量量表是可行和可靠的,其内部一致性良好,高于 0.70,且应答缺失率最低。然而,由于参与者人数有限,临床活动严重程度指数与疲劳和一般评分的相关性较差。这些模型的进一步验证需要更大规模的多中心研究。
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Applicability of the PedsQLTM 4.0 Generic and Fatigue Modules in Romanian Children with Inflammatory Bowel Disease: Pilot Study.

The Pediatric Quality of Life (PedsQL) Inventory is a tool used to measure Health Related Quality of Life (HRQoL) in children aged 2 to 18 years. The aim of the present study was to investigate the feasibility and reliability of the Romanian version of two PedsQL modules, the Generic Core and the Multidimensional Fatigue Scales, in children with inflammatory bowel disease (IBD). Children diagnosed with IBD in our clinic and their parents completed a total of 26 Romanian version PedsQL forms, while a control group of healthy children and their caregiver filled in 86 identical online forms. We compared total and dimensional scores between controls and subjects, along with age, sex, and active versus inactive disease differences. The results indicated that the PedsQL total and summary scores differentiated between subjects and controls, with lower HRQoL and higher levels of fatigue being reported in children with chronic IBD. The Romanian version of the PedsQL was found to be feasible and reliable, with good internal consistency higher than 0.70 and minimum missing responses. However, the limited number of participants meant that clinical activity severity indices correlated poorly with fatigue and generic scores. Further validation of these models requires larger, multi-centric studies.

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