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儿童生活质量量表4.0通用版和疲劳模块在罗马尼亚炎性肠病儿童中的适用性:初步研究

Applicability of the PedsQLTM 4.0 Generic and Fatigue Modules in Romanian Children with Inflammatory Bowel Disease: Pilot Study.

作者信息

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

机构信息

Department of Pediatrics, Marie Curie Emergency Children's Hospital, 041451 Bucharest, Romania.

Department of Physiology, "Carol Davila" University of Medicine and Pharmacy, 020021 Bucharest, Romania.

出版信息

Maedica (Bucur). 2023 Dec;18(4):607-614. doi: 10.26574/maedica.2023.18.4.607.

DOI:10.26574/maedica.2023.18.4.607
PMID:38348060
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC10859203/
Abstract

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.

摘要

儿童生活质量(PedsQL)量表是一种用于测量2至18岁儿童健康相关生活质量(HRQoL)的工具。本研究的目的是调查罗马尼亚语版的两个PedsQL模块,即通用核心模块和多维疲劳量表,在炎症性肠病(IBD)儿童中的可行性和可靠性。在我们诊所被诊断为IBD的儿童及其父母共填写了26份罗马尼亚语版的PedsQL表格,而一组健康儿童及其照顾者组成的对照组填写了86份相同的在线表格。我们比较了对照组和研究对象之间的总分和维度得分,以及年龄、性别和疾病活动与非活动状态的差异。结果表明,PedsQL总分和总结得分能够区分研究对象和对照组,慢性IBD儿童报告的HRQoL较低,疲劳水平较高。罗马尼亚语版的PedsQL被发现是可行和可靠的,具有高于0.70的良好内部一致性和最少的缺失回答。然而,参与者数量有限意味着临床活动严重程度指数与疲劳和通用得分的相关性较差。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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本文引用的文献

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A Systematic Review and Meta-analysis of Paediatric Inflammatory Bowel Disease Incidence and Prevalence Across Europe.一项在欧洲范围内对儿童炎症性肠病发病率和流行率进行的系统评价和荟萃分析。
J Crohns Colitis. 2020 Sep 7;14(8):1119-1148. doi: 10.1093/ecco-jcc/jjaa037.
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Front Public Health. 2018 Jun 11;6:149. doi: 10.3389/fpubh.2018.00149. eCollection 2018.
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Worldwide incidence and prevalence of inflammatory bowel disease in the 21st century: a systematic review of population-based studies.21 世纪全球炎症性肠病的发病率和流行率:基于人群的系统综述研究。
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Inflammatory Bowel Disease in Children and Adolescents.儿童和青少年炎症性肠病
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Consensus guidelines of ECCO/ESPGHAN on the medical management of pediatric Crohn's disease.欧洲克罗恩病和结肠炎组织/欧洲儿科胃肠病、肝病和营养学会关于儿童克罗恩病药物治疗的共识指南。
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