IDEAS home Printed from https://ideas.repec.org/a/eee/socmed/v340y2024ics0277953623008638.html
   My bibliography  Save this article

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

Author

Listed:
  • 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
    as

    Download full text from publisher

    File URL: http://www.sciencedirect.com/science/article/pii/S0277953623008638
    Download Restriction: Full text for ScienceDirect subscribers only
    File URL: https://libkey.io/10.1016/j.socscimed.2023.116506?utm_source=ideas
    LibKey link: if access is restricted and if your library uses this service, LibKey will redirect you to where you can use your library subscription to access this item
    ---><---

    As the access to this document is restricted, you may want to search for a different version of it.

    References listed on IDEAS

    as
    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.
    Full references (including those not matched with items on IDEAS)

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.
    1. Huang, Li & Devlin, Nancy & Chen, Gang & Dalziel, Kim, 2024. "A happiness approach to valuing health states for children," Social Science & Medicine, Elsevier, vol. 348(C).
    2. 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.
    3. 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.
    4. van Hulsen, Merel A.J. & Rohde, Kirsten I.M. & van Exel, Job, 2023. "Preferences for investment in and allocation of additional healthcare capacity," Social Science & Medicine, Elsevier, vol. 320(C).
    5. Anita Hubley & Lara Russell & Anita Palepu & Stephen Hwang, 2014. "Subjective Quality of Life Among Individuals who are Homeless: A Review of Current Knowledge," Social Indicators Research: An International and Interdisciplinary Journal for Quality-of-Life Measurement, Springer, vol. 115(1), pages 509-524, January.
    6. David J. Mott & Laura Ternent & Luke Vale, 2023. "Do preferences differ based on respondent experience of a health issue and its treatment? A case study using a public health intervention," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 24(3), pages 413-423, April.
    7. Aujoulat, Isabelle & Marcolongo, Renzo & Bonadiman, Leopoldo & Deccache, Alain, 2008. "Reconsidering patient empowerment in chronic illness: A critique of models of self-efficacy and bodily control," Social Science & Medicine, Elsevier, vol. 66(5), pages 1228-1239, March.
    8. Bruce C. Martin & Benson Honig, 2020. "Inclusive Management Research: Persons with Disabilities and Self-Employment Activity as an Exemplar," Journal of Business Ethics, Springer, vol. 166(3), pages 553-575, October.
    9. Kim Dalziel & Max Catchpool & Borja García-Lorenzo & Inigo Gorostiza & Richard Norman & Oliver Rivero-Arias, 2020. "Feasibility, Validity and Differences in Adolescent and Adult EQ-5D-Y Health State Valuation in Australia and Spain: An Application of Best–Worst Scaling," PharmacoEconomics, Springer, vol. 38(5), pages 499-513, May.
    10. Stefan A. Lipman & Liying Zhang & Koonal K. Shah & Arthur E. Attema, 2023. "Time and lexicographic preferences in the valuation of EQ-5D-Y with time trade-off methodology," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 24(2), pages 293-305, March.
    11. de Hond, Anne & Bakx, Pieter & Versteegh, Matthijs, 2019. "Can time heal all wounds? An empirical assessment of adaptation to functional limitations in an older population," Social Science & Medicine, Elsevier, vol. 222(C), pages 180-187.
    12. S. Bentolhoda Mousavi & Dusica Lecic-Tosevski & Hassan Khalili & S. Zeinab Mousavi, 2020. "To be able, or disable, that is the question: A critical discussion on how language affects the stigma and self-determination in people with parability," International Journal of Social Psychiatry, , vol. 66(5), pages 424-430, August.
    13. Octave Jokung & Serge Macé, 2013. "Long-term health investment when people underestimate their adaptation to old age-related health problems," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 14(6), pages 1003-1013, December.
    14. Kamila Czepczor-Bernat & Justyna Modrzejewska & Adriana Modrzejewska & Emanuela Calandri & Silvia Gattino & Chiara Rollero, 2022. "Dyadic Predictors of Child Body Shame in a Polish and Italian Sample," IJERPH, MDPI, vol. 19(14), pages 1-12, July.
    15. Thébaut, Clémence, 2013. "Dealing with moral dilemma raised by adaptive preferences in health technology assessment: The example of growth hormones and bilateral cochlear implants," Social Science & Medicine, Elsevier, vol. 99(C), pages 102-109.
    16. Astrid Wahl & Tone Rustøen & Berit Hanestad & Eva Gjengedal & Torbjørn Moum, 2005. "Self-Efficacy, Pulmonary Function, Perceived Health and Global Quality of Life of Cystic Fibrosis Patients," Social Indicators Research: An International and Interdisciplinary Journal for Quality-of-Life Measurement, Springer, vol. 72(2), pages 239-261, June.
    17. Karni, Edi & Vierø, Marie-Louise, 2023. "Comparative incompleteness: Measurement, behavioral manifestations and elicitation," Journal of Economic Behavior & Organization, Elsevier, vol. 205(C), pages 423-442.
    18. Chen, Duan-Rung & Chang, Ly-Yun & Yang, Meng-Li, 2008. "Gender-specific responses to social determinants associated with self-perceived health in Taiwan: A multilevel approach," Social Science & Medicine, Elsevier, vol. 67(10), pages 1630-1640, November.
    19. Natalia Golini & Viviana Egidi, 2016. "The Latent Dimensions of Poor Self-Rated Health: How Chronic Diseases, Functional and Emotional Dimensions Interact Influencing Self-Rated Health in Italian Elderly," Social Indicators Research: An International and Interdisciplinary Journal for Quality-of-Life Measurement, Springer, vol. 128(1), pages 321-339, August.
    20. Thomas Butt & Adnan Tufail & Gary Rubin, 2017. "Health State Utility Values for Age-Related Macular Degeneration: Review and Advice," Applied Health Economics and Health Policy, Springer, vol. 15(1), pages 23-32, February.

    More about this item

    Statistics

    Access and download statistics

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:eee:socmed:v:340:y:2024:i:c:s0277953623008638. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: Catherine Liu (email available below). General contact details of provider: http://www.elsevier.com/wps/find/journaldescription.cws_home/315/description#description .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.