Lay Summary

When estimating the benefits of healthcare, including medicines and other treatments, impacts on patients’ length of life and quality of life are considered. As quality of life consists of a number of aspects, people are asked in research studies to provide information used to estimate how much they ‘value’ (or place importance on) different aspects of quality of life. This information is used in cost-benefit analyses. In these kinds of research studies, decisions need to be made on who is asked to provide their values (e.g., members of the general public or patients) and in what context (e.g., should they think about themselves or other people?). Many of these research decisions are known as ‘normative’, i.e. they are value-based judgments, usually based on consensus.

When identifying values for adult health and quality of life, the most common approach in the UK is to ask adult members of the general public, who are asked to think about and respond for themselves. However, for children and adolescent health and quality of life, there is less guidance and agreement, and multiple normative decisions arise. For example, should we ask adults or children and adolescents? If we ask children and adolescents, what age range of people should we ask? If we ask adults, should we ask them to think about themselves or to think about a child? If we ask people to think about a child, what age child should we ask them to think about? One way of helping researchers to come to a decision on these and related issues is through consultation with the public and subject experts.

Developing better methods for valuing health and quality of life in children and adolescents is a priority area for The National Institute for Health and Care Excellence (NICE). Despite being funders and users of the healthcare system, there is no evidence currently available about the public’s views on how the values of health and quality of life in children and adolescents should be determined. Further, limited work has been undertaken to establish and document any consensus on the kinds of normative decisions mentioned above from experts working in this area.

Using a focus group and specialised consensus-building methodology, this project seeks to i) better understand public opinion on decisions made to obtain values of health and quality of life in children and adolescents; and ii) using evidence from (i), establish and document consensus in expert opinion on the issue. It is hoped that the outcomes from this project will inform subsequent good practice in how health and quality of life is valued in children and adolescents, used as part of healthcare evaluation.