Assessment of the content validity of the EQ-HWB in caregivers of children and adolescents with autism spectrum disorder

This study aimed to evaluate the content validity of the EuroQol Health and Wellbeing (EQ-HWB, v1.2 ‘experimental modified’, 2024) in caregivers of children and adolescents with autism spectrum disorder (ASD), specifically examining its comprehensiveness, relevance and comprehensibility, with the aim of providing population-specific evidence to inform the application and interpretation of the EQ-HWB among Chinese caregivers of children and adolescents with ASD and to contribute to its broader international evaluation. In 2025, semi-structured, in-depth web-based interviews were conducted to evaluate the content validity of the EQ-HWB with 31 caregivers of children and adolescents with ASD. Participants were recruited from two patient advocacy associations in China. Data were analysed using framework analysis following the COSMIN guidelines, with particular attention to the aspects of relevance, comprehensibility, and comprehensiveness. Caregivers had a mean age of 40.3 years, while children with ASD had a mean age of 10.3 years (range, 8–17 years). Overall, relevance, comprehensibility, and comprehensiveness were generally rated positively. The most relevant items were “anxiety”, “frustration”, “sadness/depression”, “loneliness”, and “sleeping difficulties,” broadly reflecting caregivers’ health and wellbeing under sustained caregiving demands. However, as a generic measure, the EQ-HWB showed several limitations in this caregiver sample. Sensory and physical functioning items had limited relevance: “getting around inside or outside,” for example, was often seen as more applicable to older adults or people with physical disabilities. Some examples within the “day-to-day activities” item showed weak contextual fit, with “work” less relevant for full-time homemakers and “shopping” complicated by the shift to online purchasing (both raised by 12/31, 38.7%). Comprehensiveness was also questioned: 13 participants (41.9%) noted the absence of content on economic or financial strain, and 14 (45.2%) felt the instrument inadequately captured caregiving-specific social experiences, particularly reduced social participation. Conceptual overlap between the “control” and “coping” items was raised by 17 participants (54.8%). Response options were considered appropriate, and 29 participants correctly understood the “last 7 days” timeframe, with 15 participants (48.4%) preferring a longer recall period of 14–30 days. The EQ-HWB showed acceptable content validity among Chinese caregivers of children and adolescents with autism, although limitations remained regarding certain physical-functioning items, the contextual fit of examples, and the coverage of caregiving-specific burden.