EQ-5D(-Y) Valuation from Adult and Child Perspectives: Where Does the Empirical Evidence Leave Us and How Should We Proceed?

Valuing pediatric health-related quality of life (HRQOL) is essential for economic evaluations in child healthcare. Instruments like EQ-5D-Y were developed for this purpose. A key methodological innovation-though controversial-has been the use of the child perspective for valuation of EQ-5D-Y health states, where adults value health states imagining a 10-year-old child. This paper critically reviews empirical findings on this approach, examines potential biases, assesses alignment with stakeholder views, and explores alternatives. We relied on a targeted review of empirical literature, including studies comparing adults valuing their own health (adult perspective) and using child perspectives, as well as stakeholder opinion studies. Findings were synthesized into ten key learnings: (1) Child-perspective valuations are typically higher than adult ones for the same health states. (2) Adults prioritize pain/discomfort and being sad/unhappy differently for children. (3) Child age has minimal impact. Mechanisms contributing to differences between adult and child perspectives include (4) discomfort with child death, (5) different valuations of life duration, (6) psychological distance, (7) emotional difficulty deciding for others, and (8) external goals influencing results. Stakeholder engagement shows that (9) the effects of using child perspectives do not align well with societal preferences, and (10) stakeholders express a preference for approaches that directly involve children and adolescents in valuation tasks. We conclude that relying on child perspectives may introduce systematic biases, potentially undermining the validity of pediatric health utilities. A re-evaluation of current valuation methods for EQ-5D-Y may be warranted, with greater consideration for direct child involvement, mapping techniques, and group-based deliberative approaches.