School of Public Health, University of Alberta, Edmonton, Canada.
Department of Paediatrics, Cumming School of Medicine, University of Calgary, Calgary, Canada.
Qual Life Res. 2024 Oct;33(10):2677-2691. doi: 10.1007/s11136-024-03682-4. Epub 2024 Aug 14.
OBJECTIVES: Juvenile idiopathic arthritis (JIA) is the most common type of arthritis among children. It can cause joint pain and permanent physical damage, which affects mobility and daily activities. The EQ-5D-Y-3L self-report version has been validated in JIA, but the validity of EQ-5D-Y-5L remains unknown. We examined the psychometric properties of the EQ-5D-Y-5L parent-proxy version among children with JIA. METHODS: We used data from the Understanding Childhood Arthritis Network Canadian-Dutch collaboration study cohort, including patients with new-onset JIA, and those starting or stopping biologics. Clinical data and the parent-proxy version of the childhood health assessment questionnaire (CHAQ) and EQ-5D-Y-5L were collected. We evaluated the ceiling and floor effect; convergent and divergent validity using Spearman's rank correlation; known-group validity using one-way ANOVA (Analysis of Variance) and effect size; and informativity using Shannon's evenness index. RESULTS: 467 patient visits representing 407 patients were analyzed. The EQ-5D-Y-5L had no ceiling/floor effect. The EQ-5D-Y-5L showed good convergent (e.g., EQ-5D-Y-5L pain/discomfort dimension vs. CHAQ pain index (Spearman's r = 0.74, 95% confidence interval (C.I.): 0.69-0.79)), divergent (e.g., EQ-5D-Y-5L pain/discomfort dimension vs. CHAQ eating dimension (Spearman's r = 0.19, 95% C.I.: 0.09-0.29)) and known-group validity (e.g., mean EQ-5D-Y-5L level summary score for patients with inactive versus active disease status, 6.34 vs. 10.52 (p < 0.001, effect size = 1.20 (95% C.I.: 0.95-1.45)). Shannon's evenness index ranged from 0.52 to 0.88, suggesting most dimensions had relatively even distributions. CONCLUSIONS: In this patient sample, EQ-5D-Y-5L parent-proxy version exhibited construct validity and informativity, suggesting the EQ-5D-Y-5L can be used to measure the quality of life of children with JIA.
目的:幼年特发性关节炎(JIA)是儿童中最常见的关节炎类型。它会引起关节疼痛和永久性身体损伤,从而影响活动能力和日常活动。EQ-5D-Y-3L 自评版本已在 JIA 中得到验证,但 EQ-5D-Y-5L 的有效性尚不清楚。我们研究了 JIA 患儿的 EQ-5D-Y-5L 家长代理版本的心理测量特性。
方法:我们使用了来自加拿大-荷兰合作研究网络(Understanding Childhood Arthritis Network)研究队列的新发病例 JIA 患者和开始或停止生物制剂治疗的患者的数据。收集了临床数据以及儿童健康评估问卷(CHAQ)和 EQ-5D-Y-5L 的家长代理版本。我们评估了天花板和地板效应;使用 Spearman 等级相关评估了收敛和发散效度;使用单因素方差分析(Analysis of Variance,ANOVA)和效应量评估了已知组间的差异;使用 Shannon 均匀度指数评估了信息量。
结果:分析了 467 次就诊,代表了 407 名患者。EQ-5D-Y-5L 没有天花板/地板效应。EQ-5D-Y-5L 显示出良好的收敛性(例如,EQ-5D-Y-5L 疼痛/不适维度与 CHAQ 疼痛指数(Spearman's r=0.74,95%置信区间(CI):0.69-0.79))和发散性(例如,EQ-5D-Y-5L 疼痛/不适维度与 CHAQ 饮食维度(Spearman's r=0.19,95%CI:0.09-0.29))以及已知组间的差异(例如,无活动与有活动疾病状态的患者的 EQ-5D-Y-5L 水平总评分均值,6.34 与 10.52(p<0.001,效应量=1.20(95%CI:0.95-1.45))。Shannon 均匀度指数范围为 0.52 至 0.88,表明大多数维度的分布相对均匀。
结论:在该患者样本中,EQ-5D-Y-5L 家长代理版本表现出了结构有效性和信息量,表明 EQ-5D-Y-5L 可用于测量 JIA 患儿的生活质量。
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