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.
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.
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.
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.
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.
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。
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。
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。
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。
