‘Like holding the axe on who should live or not’: adolescents’ and adults’ perceptions of valuing children’s health states using a standardised valuation protocol for the EQ-5D-Y-3L

PURPOSE: There is an increasing interest for using qualitative methods to investigate peoples’ cognitive process when asked to value health states. A standardised valuation protocol for the EQ-5D-Y-3L instrument was recently developed. Little is known regarding how people think, reason, and feel when asked to value health states for children. The aim was to explore how adolescents and adults perceive the task of valuing children’s health states using the standardised valuation protocol. METHODS: This was a qualitative study where adults (n = 10) and adolescents (n = 10) from the general population participated in individual video-interviews. Initially, participants reported their own health with the EQ-5D-3L instrument. Then they were asked to complete several valuations tasks for a 10-year-old child according to the standardised valuation protocol, followed by a semi-structured interview with open-ended questions to further explore participants’ perceptions. A qualitative content analysis was performed. RESULTS: The two main categories that emerged from the data were ‘Thoughts and feelings when valuing children’s health states’ and ‘Strategies when valuing children’s health states’. Participants expressed feeling doubt, awfulness and being reluctant to trade-off life years, and questioned who has the right to value health states for children. Experience and point of view were strategies participants used to complete the valuation tasks. CONCLUSION: The findings from the present study can contribute to the understanding and interpretation of quantitative results where the standardised valuation protocol has been used to derive values for the EQ-5D-Y-3L. Furthermore, results of the study support the feasibility of including adolescents in valuation studies. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s11136-022-03107-0.