Validation of the EQ-5D-Y-5L parent-proxy version among children with juvenile idiopathic arthritis

Arto Ohinmaa, Jiabi Wen, Gillian R. Currie*, Susanne M. Benseler, Joost F. Swart, Sebastiaan J. Vastert, Rae S.M. Yeung, Deborah A. Marshall

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

Abstract

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.

Original languageEnglish
Pages (from-to)2677-2691
Number of pages15
JournalQuality of Life Research
Volume33
Issue number10
Early online date14 Aug 2024
DOIs
Publication statusPublished - Oct 2024

Keywords

  • EQ-5D-Y-5L
  • Health-related quality of life
  • Juvenile idiopathic arthritis
  • Patient-reported outcome measure
  • Psychometric properties
  • Validity

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