ArticleHealth expectations : an international journal of public participation in health care and health policy2025
A Qualitative Examination of the Content Validity of the EQ-5D-5L and EQ-5D-Y-3L in Adult and Paediatric Patients With Duchenne Muscular Dystrophy.
Article in Health expectations : an international journal of public participation in health care and health policy, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.
What it found
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The trial behind it
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Who cites it
4 citing papers in PubMed.
- Health-related quality of life and adverse events during 14 days after receiving a live-attenuated influenza vaccine in Japanese children 4-15 years of age.Human vaccines & immunotherapeutics · 2026Article
- Self-perceived Health Exceeds Societal Valuation Across Cardiac Neuromuscular Disease: Implications for Device Therapy Decision-making.CJC open · 2026Article
- Systematic Literature Reviews of Health-State Utility Values, Costs, and Healthcare Resource Use in Duchenne Muscular Dystrophy.Journal of health economics and outcomes research · 2026Article
- A Qualitative Examination of the Content Validity of the EQ-5D-5L and EQ-5D-Y-3L in Adult and Paediatric Patients With Duchenne Muscular Dystrophy.Health expectations : an international journal of public participation in health care and health policy · 2025Article
Corrections and comments
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Authors and funding
4 authors.
Funding
Abstract
objectiveThis study examined the content validity of EQ-5D for Chinese patients with DMD. Specifically, it investigated: (1) the content validity of EQ-5D-5L in adult DMD patients and (2) the content validity of EQ-5D-Y-3L (Y-3L) in DMD patients aged 8-15 years.
methodThis qualitative study used semi-structured interviews and conducted one-on-one and online, with two groups of individuals with DMD to examine the content validity of the EQ-5D-5L and Y-3L. All participants were recruited from a nationwide DMD patient association. The study included both adult and paediatric DMD patients. Data were analysed using a framework approach.
resultsA total of 30 interviews were completed, with 15 for adult patients and 15 for paediatric patients. Overall, EQ-5D-5L and Y-3L covered the most important aspects of HRQoL for DMD patients. However, many adult patients were unclear about the 'Mobility' item, suggesting clearer guidance on whether it refers to unaided physical mobility or mobility with assistive devices like wheelchairs. Paediatric patients felt that the three option levels were not enough to accurately describe their mobility. Both adult and paediatric patients noted that essential activities like 'toileting' were missing from the self-care section. They also found the examples of usual activities, such as housework, to be unsuitable. Some paediatric patients disliked the examples in Y-3L (headaches and itchiness) and preferred having no examples at all. Regarding mental health questions, both groups struggled to connect their condition with psychological effects.
conclusionBoth EQ-5D-5L and Y-3L showed acceptable content validity; however, our findings indicated the need to refine and optimise these tools to better capture critical HRQoL domains for DMD and potentially other neuromuscular diseases. PATIENT OR PUBLIC CONTRIBUTION: The study was conducted in partnership with a DMD patient association, which played a key role in shaping the study's design and implementation. The association also contributed to reviewing the interview schedule.
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