Nothing about us, without us? A reflection on and call for involving children in the process of valuing child health.

Abstract

A key question in economic evaluation is whose preferences health-related quality of life (HRQoL) values should be based on. This question becomes increasingly prominent and complex when it comes to the evaluation of health interventions aimed at children, as this requires the valuation of child health states. Resulting discussions have focused on whose preferences should be elicited, from what perspective, and how - highlighting important challenges. As opposed to current EQ-5D-Y protocol (i.e., valuation of child health states by adult members of the public), this paper explores the potential involvement of children in the process of valuing child health. We identified arguments for public involvement in healthcare decision-making in the broader literature and examined their relevance to involving children in the health state valuation (HSV) process. Overall, in line with recent empirical findings, the arguments provide a basis for broadly exploring the involvement of children. Given the concerns regarding the direct involvement of children in HSV tasks, we call for a shift of thinking in two ways: children can be involved in the process of coming to HRQoL values in more ways than only HSV tasks, and the focus should move from whether children should be involved in HSV to exploring how they can be involved.