Understanding Views around the Normative Decisions Made To Value Health-Related Quality of Life in Children and Young People: Study Protocol

This document is a research protoocol for 'Understanding views around the normative decisions made to value health-related quality of life in children and young people'.

The research is funded by the National Institute for Health Research (NIHR) Policy Research Programme, conducted through the Policy Research Unit in Economic Methods of Evaluation in Health and Social Care Interventions, PR-PRU-1217-20401. The views expressed are those of the authors and not necessarily those of the National Institute of Health and Care Excellence, the National Institute for Health Research, the Department of Health and Social Care or its arm's length bodies, or other UK government departments. This research has ethical approval from the University of Sheffield (reference: 046269).

Abstract: Developing better methods for measuring and valuing health related quality of life (HRQoL) in children and young people is a priority area for NICE. One aspect of this is the normative decisions that are made around the valuation of HRQoL in children and young people for use in Health Technology Assessments (HTAs) for submission to NICE. There is limited evidence currently available about the public’s views on how valuation studies should be designed to generate values for the HRQoL of children and young people. However, it can be argued that the normative decisions on how valuation studies should be conducted (whose health should be imagined, which tasks should be used) and who should be involved in them (adults, young people or both) should take societal preferences into account. Furthermore, little consensual insight has been observed or documented amongst experts involved in HTAs (including health economists and decision-makers) regarding their perspectives on who should be asked and under what conditions. Using a two-stage methodology, the proposed research seeks to produce novel evidence on the public’s viewpoint on the normative decisions related to the valuation of health in children and young people using focus groups. These findings will then form part of the material for a Delphi process with key experts in an attempt to reach and report a consensus of views on who should be asked and which perspective used for child health valuation.