OBJECTIVES: There is a critical need to be able to capture health outcomes in pediatric populations, including through health utility measures like the EQ-5D-Y-3L. This study aimed to: (1) estimate a US EQ-5D-Y-3L value set and (2) summarize challenges in deriving a value set comprising adult and adolescent preferences.

METHODS: Adapting methods from the EuroQol EQ-5D-Y-3L valuation protocol, US adults and adolescents (ages 11-17) completed an online discrete choice experiment (DCE) including 15 pairwise comparisons of EQ-5D-Y-3L health states. Adolescents completed tasks from their own perspective, while adults completed the tasks framed as a 10-year-old. Adults were subsequently invited to complete ten composite time trade-off (cTTO) valuation tasks via videoconferencing with trained interviewers. DCE data were analyzed using latent class (LC) models of 2-6 classes. Adjusted mean values for each of 28 health states from cTTO tasks were estimated using Tobit models censored at -1 and 0. Information from the best fitting LC model and cTTO models were combined in a LC-hybrid model with coefficients represented on a 0 (dead) to 1 (full-health) scale. As recommended by stakeholder engagement prior to data collection, a combined adult/adolescent model was estimated, weighted by the proportion of 11-17 year-olds in the US population.

RESULTS: Estimated utilities for state 33333 to 12111 ranged from 0.011–0.970 for the adult/adolescent model and from 0.006–0.973 for an adult only model. In both models, pain/discomfort was the most important dimension followed by feeling worried/sad/unhappy. Coefficients between models were similar, with the largest difference of 0.016 in level 3 of mobility.

CONCLUSIONS: This US EQ-5D-Y-3L value set is informed by US stakeholders and is the first to include adolescent preferences. There were unique challenges encountered that will be important for future studies to consider, including task framing perspectives, reconciling diverse stakeholder input, weakness of adolescent preference, and basis for anchoring.