Findings from a Roundtable Discussion with US Stakeholders on Valuation of the EQ-5D-Y-3L

OBJECTIVES: The International Valuation Protocol for the valuation of the EQ-5D-Y-3L provides baseline guidance, but country-specific context is also important. This study aimed to obtain US stakeholders’ input on key considerations for youth valuation in the US. METHODS: A total of 14 stakeholders representing various backgrounds were identified via the investigators’ networks. A 2-h online meeting was held to discuss (1) the need for a US value set for the EQ-5D-Y-3L; (2) willingness to pay more for quality-adjusted life-year (QALY) gains for children versus adults; (3) sampling strategies; (4) framing perspectives; and (5) other challenges. The session was recorded, transcribed, and summarized. RESULTS: Several stakeholders supported paying more for QALY gains for children in recognition of their potential future contributions to society, as well as to avoid potential undervaluation and promote access to innovative treatments. Concerns regarding possible double counting, lack of data to showcase long-term benefits, and dangers of paying more for certain subgroups were also expressed. Most of the stakeholders felt that adolescents could relate to a 10-year-old’s perspective better than adults and were capable of self-completing valuation tasks, and thus should be directly included in the valuation study. There were concerns that adults would be inconsistent in their views about a 10-year-old, partly depending on their status as a parent. CONCLUSIONS: US stakeholders provided insights relevant to youth valuation in a US context and were open to continued dialogue with investigators. This study could be useful to investigators who are conducting youth valuation studies in different countries and seeking stakeholder input.