OBJECTIVES: A methodological research program is underway to inform a valuation study for the EQ-5D-Y in Canada. Our objective is to present the results of this extensive research program.

METHODS: This program has three components: 1) stakeholder engagement; 2) a multi-country pilot study; and 3) focus group interviews. To start, we conducted semi-structured qualitative interviews with Canadian stakeholders to understand their views on measuring and valuing child health. Based on their feedback, we designed an online discrete choice experiment (DCE) valuation task to elicit preferences for EQ-5D-Y-5L health states. An international pilot study was conducted to collect health state preferences from children, adolescents, and adults using the DCE valuation task. Now, we are conducting a focus group study among adolescents to explore their experience with the online DCE tasks.

RESULTS: A total of 15 interviews were conducted with stakeholders from HTA agencies (n=4), healthcare providers for pediatric populations (n=4), academia (n=5), and the pharmaceutical industry (n=2). Most participants expressed that preferences should be elicited directly from children and adolescents using their own perspective (n=12). Most participants (n=11) preferred the use of DCE over time trade-off. The online DCE valuation task was administered to children (aged 12-15, n=500), adolescents (aged 16-17, n=500), and adults (aged ≥18, n=1000). Logical inconsistencies in DCE responses among children and adolescents were observed. Engagement with children and adolescents is essential to understand why this occurred. As a final step, our team is conducting focus groups to explore whether adolescents can assign preferences to hypothetical health states and to deepen our understanding of the process they employ to complete the DCE valuation tasks.

CONCLUSIONS: This research program provides both qualitative and quantitative evidence on the feasibility of eliciting health state preferences directly from Canadian children and adolescents using DCE. The results will inform the design of the EQ-5D-Y-5L Canadian valuation study.