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

A qualitative study

Bibliographic Data

ID4595941
AuthorsPhilip A Powell (0000-0003-1169-3431, University of Sheffield, corresponding author), Donna Rowen (0000-0003-3018-5109, University of Sheffield), Anju Keetharuth (0000-0001-8889-6806, University of Sheffield), Clara Mukuria (0000-0003-4318-1481, University of Sheffield)
Year2024
Volume340
Pages116506
Publication date2024-01-01
Peer ReviewedYes
Open AccessYes
TypeARTICLE
VenueSocial Science & Medicine (JOURNAL)
Journal identifiersISSN: 0277-9536 • E-ISSN: 1873-5347
PublisherElsevier BV (PUBLISHER)
DOI10.1016/j.socscimed.2023.116506
PMID38104438
OpenAlexW4389640449
LanguageEN
Citations received2
References cited23

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

Developmental psychology · Economics · Focus group · Normative · Political science · Public health · Qualitative research · Quality of life (healthcare · Social science · Sociology · Valuation (finance · Global Health Care Issues · Health Systems, Economic Evaluations, Quality of Life · Healthcare Policy and Management · Law · Medicine · Nursing · Psychology · Social Psychology

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