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Assessing validity of the EQ-5D-5L proxy in children and adolescents with Duchenne muscular dystrophy or spinal muscular atrophy

Author

Listed:
  • Richard Huan Xu

    (The Hong Kong Polytechnic University)

  • Yi Dai

    (Peking Union Medical College Hospital, Chinese Academy of Medical Sciences & Peking Union Medical College)

  • Shamay S. M. Ng

    (The Hong Kong Polytechnic University)

  • Hector W. H. Tsang

    (The Hong Kong Polytechnic University
    Mental Health Research Centre, The Hong Kong Polytechnic University)

  • Shuyang Zhang

    (Peking Union Medical College Hospital, Chinese Academy of Medical Sciences & Peking Union Medical College)

  • Dong Dong

    (The Chinese University of Hong Kong)

Abstract

Objective To assess the psychometric properties of the EuroQol-5-Dimension five-level instrument (EQ-5D-5L) proxy in caregivers of children and adolescents with Duchenne muscular dystrophy (DMD) or spinal muscular atrophy (SMA). Method Data were collected using the EQ-5D-5L proxy for individuals with DMD or SMA, as reported by their caregivers. Ceiling and floor effects, reliability (Cronbach’s alpha), convergent and divergent validity (Spearman's correlation coefficient and Bland–Altman plot) and known-group validity (analysis of variance) was used to assess the instrument’s psychometric properties. Results Totally, 855 caregivers completed the questionnaire. Significant floor effects were observed for most dimensions of the EQ-5D-5L in both SMA and DMD samples. The EQ-5D-5L was strongly correlated with the hypothesized subscales of the SF-12, which confirmed satisfactory convergent and divergent validity. The EQ-5D-5L can significantly differentiate between impaired functional groups for individuals, demonstrating satisfactory discriminative ability. The agreement between the EQ-5D-5L utility and EQ-VAS scores was poor. Conclusions Based on the measurement properties assessed in this study, the EQ-5D-5L proxy is a valid and reliable tool for measuring the health-related quality of life of individuals with DMD or SMA rated by caregivers. Further studies should examine the content validity of the EQ-5D as well as the performance of its young version in these two patient groups.

Suggested Citation

  • Richard Huan Xu & Yi Dai & Shamay S. M. Ng & Hector W. H. Tsang & Shuyang Zhang & Dong Dong, 2024. "Assessing validity of the EQ-5D-5L proxy in children and adolescents with Duchenne muscular dystrophy or spinal muscular atrophy," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 25(1), pages 103-115, February.
    • Handle: RePEc:spr:eujhec:v:25:y:2024:i:1:d:10.1007_s10198-023-01574-x
    DOI: 10.1007/s10198-023-01574-x
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    References listed on IDEAS

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    1. Eliza Lai Yi Wong & Richard Huan Xu & Annie Wai Ling Cheung, 2020. "Health-related quality of life in elderly people with hypertension and the estimation of minimally important difference using EQ-5D-5L in Hong Kong SAR, China," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 21(6), pages 869-879, August.
    2. Norah L. Crossnohere & Ryan Fischer & Andrew Lloyd & Lisa A. Prosser & John F. P. Bridges, 2021. "Assessing the Appropriateness of the EQ-5D for Duchenne Muscular Dystrophy: A Patient-Centered Study," Medical Decision Making, , vol. 41(2), pages 209-221, February.
    3. Philip A. Powell & Jill Carlton & Donna Rowen & John Brazier & Karen Facey & Klair Bayley & Fleur Chandler & Josie Godfrey & Emily Crossley, 2022. "Measuring What Matters: Little Evidence Supporting the Content Validity of EQ-5D in People with Duchenne Muscular Dystrophy and Their Caregivers," Medical Decision Making, , vol. 42(2), pages 139-140, February.
    4. Richard Huan Xu & Dong Dong & Nan Luo & Eliza Lai-Yi Wong & Yushan Wu & Siyue Yu & Renchi Yang & Junshuai Liu & Huiqin Yuan & Shuyang Zhang, 2021. "Evaluating the psychometric properties of the EQ-5D-5L and SF-6D among patients with haemophilia," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 22(4), pages 547-557, June.
    5. Eliza Lai yi Wong & Richard Huan Xu & Annie Wai ling Cheung, 2019. "Measuring the impact of chronic conditions and associated multimorbidity on health-related quality of life in the general population in Hong Kong SAR, China: A cross-sectional study," PLOS ONE, Public Library of Science, vol. 14(11), pages 1-16, November.
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