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

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. Fisher’s exact test was used to assess the differences between child-self reported HRQoL across subgroups. The inter-rater agreement between child-parent dyads was assessed with CCC for overall HRQoL and Gwet’s AC1 for dimension level HRQoL. 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 a higher proportion of response issues (6–7 years: 64%, 8–10 years: 62%), compared to older children (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 without (mean = 0.95, se = 0.02) (p-value < 0.001). 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 retrospective think-aloud approach adopted highlighted the relatively higher prevalence of response issues in the younger children (ages < 11 years), indicating the need for careful interpretation of self-reported HRQoL using the current version of the EQ-5D-Y-3L in this population.

Keywords

• Child self-report validity
• Preference-based HRQoL measure
• Retrospective think-aloud approach
• Mixed methods study
• Parent–child agreement