How do children understand and respond to the EQ-5D-Y-3L? A mixed methods study in a community-based sample of 6–12-year-olds.

Abstract

Background: The EQ-5D-Y-3L is widely used for measuring and valuing HRQoL in paediatric populations. This mixed methods study used the EQ-5D-Y-3L measure and applied a retrospective think-aloud approach to examine the self-report validity in children of varying chronological age. Methods: A mixed methods study was conducted in a community-based sample of 39 children aged 6-12 years. In a semi-structured interview, children self-completed the EQ-5D-Y-3L and then engaged in retrospective think-aloud. Conversations were audio-recorded and transcribed for analysis in NVivo using the Tourangeau four-stage response model framework to assess comprehension, judgment, recall, and response mapping issues. To assess the differences between the self and the two proxy reports, Fisher’s exact test was used. The overall inter-rater agreement was assessed with CCC and dimension level using Gwet’s AC1. Results: Overall, response issues were detected in n=18 (46%) children. Comprehension issues were apparent in the “having pain or discomfort” dimension where children found it challenging to understand ‘discomfort’. Recall-related issues were observed where children’s responses were influenced by their typical tendencies (e.g., being usually worried) or past incidences (e.g., feeling pain sometimes). Judgement-related issues were the most common, particularly in the “doing usual activities” dimension, where children tended to respond based on their self-perceived ability to engage in activities rather than health-related limitations. None of the participants were found to have problems with response mapping. A healthy lifestyle that included diet and exercise was a notable consideration in EQ VAS ratings. The younger age groups had the highest proportion of response issues (6-7 years: 64%, 8-10 years: 62%), while the oldest age group had the lowest (11-12 years: 20%). Moreover, children with response issues demonstrated significantly lower EQ-5D-Y-3L scores (mean=0.78, se=0.04) as compared to those with no response issues (mean=0.95, se=0.02) (p-value=0.0007). The overall inter-rater agreement was higher for those without any response issues (CCC=0.33) than those with (CCC=0.14). Additionally, higher agreement was noted across all the five dimensions in the subgroup with no response issues relative to those with. Conclusions: Children in the general community may have different perceptions of HRQoL when responding to the EQ-5D-Y-3L possibly due to their limited experience with health-related challenges. The relatively higher prevalence of response issues in the younger children (ages <11 years) highlights the need for caution in the self-assessment of HRQoL using the current version of the EQ-5D-Y-3L for this age group in this population.