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Understanding UK public views on normative decisions made to value health-related quality of life in children: A qualitative study

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  • Powell, Philip A.
  • Rowen, Donna
  • Keetharuth, Anju
  • Mukuria, Clara

Abstract

Developing methodology for measuring and valuing child health-related quality of life (HRQoL) is a priority for health technology agencies. One aspect of this is normative decisions that are made in child HRQoL valuation. This qualitative study aimed to better understand adult public opinion on the normative questions of whose preferences to elicit (adults, children, or both) and from which perspective (who should be imagined living in impaired health), when valuing child HRQoL. Opinions of the adult UK public (N = 32) were solicited using online semi-structured focus groups, featuring a breadth of age, sex, ethnicities, and responsibility for children under 18 years. Participants were provided with bespoke informational material on health state valuation and were probed for their views. Arguments for and against different positions were discussed. Data was analysed using framework analysis. Participants demonstrated near-to-universal agreement that children should be involved in valuation in some form, yet this should differ depending on age or maturity. There was strong support for approaches combining involvement from children and adults (e.g., their parents), especially for younger children. There was little intuitive support for the ‘taxpayer argument’ for asking taxpaying adults. In the context of greater involvement of children in valuation, most participants supported using an ‘own’ perspective. Most participants thought that valuation study participants should know the exercise is about valuing child health states for ethical reasons. Informed views from the UK public on who should be asked and with what perspective when valuing child HRQoL appear to differ from normative positions previously advocated by some health economists, such as prioritising the preferences of taxpaying adults. In contrast, the results suggest including adults and children in valuation, with the proviso that the children are of an appropriate age and level of maturity, and that an own perspective is used wherever possible.

Suggested Citation

  • Powell, Philip A. & Rowen, Donna & Keetharuth, Anju & Mukuria, Clara, 2024. "Understanding UK public views on normative decisions made to value health-related quality of life in children: A qualitative study," Social Science & Medicine, Elsevier, vol. 340(C).
    • Handle: RePEc:eee:socmed:v:340:y:2024:i:c:s0277953623008638
    DOI: 10.1016/j.socscimed.2023.116506
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    3. Stefan A. Lipman & Zhirui Guo, 2026. "EQ-5D(-Y) Valuation from Adult and Child Perspectives: Where Does the Empirical Evidence Leave Us and How Should We Proceed?," PharmacoEconomics, Springer, vol. 44(3), pages 267-278, March.
    4. Nancy Devlin & Bram Roudijk & Michael Herdman & Elly Stolk & Richard Norman & Simone Kreimeier & Janine Verstraete, 2026. "Valuing health states for infants and toddlers: challenges and methodological considerations in EQ-TIPS preference elicitation," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 27(2), pages 221-233, March.
    5. Shitong Xie & Tianxin Pan & Juan Manuel Ramos-Goni & Brendan Mulhern & Zhihao Yang & Richard Norman & Nancy Devlin & Feng Xie, 2025. "Eliciting and Anchoring Health State Preferences Using Discrete Choice Experiments Among Adults, Adolescents, and Children," PharmacoEconomics, Springer, vol. 43(11), pages 1353-1366, November.

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