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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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    1. Juan M. Ramos-Goñi & Mark Oppe & Elly Stolk & Koonal Shah & Simone Kreimeier & Oliver Rivero-Arias & Nancy Devlin, 2020. "International Valuation Protocol for the EQ-5D-Y-3L," PharmacoEconomics, Springer, vol. 38(7), pages 653-663, July.
    2. Wendy Ungar & Katherine Boydell & Sharon Dell & Brian Feldman & Deborah Marshall & Andrew Willan & James Wright, 2012. "A Parent-Child Dyad Approach to the Assessment of Health Status and Health-Related Quality of Life in Children with Asthma," PharmacoEconomics, Springer, vol. 30(8), pages 697-712, August.
    3. S. A. Lipman & V. T. Reckers-Droog & M. Karimi & M. Jakubczyk & A. E. Attema, 2021. "Self vs. other, child vs. adult. An experimental comparison of valuation perspectives for valuation of EQ-5D-Y-3L health states," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 22(9), pages 1507-1518, December.
    4. Arthur E. Attema & Han Bleichrodt & Olivier l’Haridon & Stefan A. Lipman, 2020. "A comparison of individual and collective decision making for standard gamble and time trade-off," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 21(3), pages 465-473, April.
    5. Donna Rowen & Clara Mukuria & Philip A. Powell & Allan Wailoo, 2022. "Exploring the Issues of Valuing Child and Adolescent Health States Using a Mixed Sample of Adolescents and Adults," PharmacoEconomics, Springer, vol. 40(5), pages 479-488, May.
    6. Versteegh, M.M. & Brouwer, W.B.F., 2016. "Patient and general public preferences for health states: A call to reconsider current guidelines," Social Science & Medicine, Elsevier, vol. 165(C), pages 66-74.
    7. Donna Rowen & Oliver Rivero-Arias & Nancy Devlin & Julie Ratcliffe, 2020. "Review of Valuation Methods of Preference-Based Measures of Health for Economic Evaluation in Child and Adolescent Populations: Where are We Now and Where are We Going?," PharmacoEconomics, Springer, vol. 38(4), pages 325-340, April.
    8. Nancy Devlin & Bram Roudijk & Rosalie Viney & Elly Stolk, 2022. "EQ-5D-Y-3L Value Sets, Valuation Methods and Conceptual Questions," PharmacoEconomics, Springer, vol. 40(2), pages 123-127, December.
    9. Albrecht, Gary L. & Devlieger, Patrick J., 1999. "The disability paradox: high quality of life against all odds," Social Science & Medicine, Elsevier, vol. 48(8), pages 977-988, April.
    10. Jonathan L. Nazari & A. Simon Pickard & Ning Yan Gu, 2022. "Findings from a Roundtable Discussion with US Stakeholders on Valuation of the EQ-5D-Y-3L," PharmacoEconomics, Springer, vol. 40(2), pages 139-146, December.
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    2. Richard Norman & Bram Roudijk & Marcel Jonker & Elly Stolk & Saskia Knies & Raoh-Fang Pwu & Ciaran O’Neill & Kirsten Howard & Nancy Devlin, 2025. "A Taxonomy for Assessing Whether HRQoL Value Sets Are Obsolete," PharmacoEconomics, Springer, vol. 43(5), pages 473-481, May.
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