Evidence map›Paper›PMID 29564713›Full record

ReviewQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2018

Preference-based measures to obtain health state utility values for use in economic evaluations with child-based populations: a review and UK-based focus group assessment of patient and parent choices.

Jane L Wolstenholme, Danielle Bargo, Kay Wang, Anthony Harnden, Ulla Räisänen, Lucy Abel

Abstract readReview
In one paragraph

Review in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 23 papers, 3 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
23citing papers in PubMed, 3 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

23 citing papers in PubMed, 3 syntheses or guidelines pooled it.

  1. Pooled it
  2. Health utilities in pediatric cancer patients and survivors: a systematic review and meta-analysis for clinical implementation.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2022
    Pooled it
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  4. Mapping PedsQL™ scores to CHU9D utility weights for children with chronic conditions in a multi-ethnic and deprived metropolitan population.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2023
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  9. Comparison of the EQ-5D-Y and the CHU-9D instruments in a general child population based on self-reports and proxy-reports.The European journal of health economics : HEPAC : health economics in prevention and care · 2025
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  13. Understanding Canadian stakeholders' views on measuring and valuing health for children and adolescents: a qualitative study.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2024
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

6 authors.

Jane L WolstenholmeHealth Economics Research Centre, Nuffield Department of Population Health, University of Oxford, New Richards Building, Old Road Campus, Oxford, OX3 7LF, UK. Jane.wolstenholme@dph.ox.ac.uk.ORCID 0000-0001-7493-1850
Danielle BargoHealth Economics Research Centre, Nuffield Department of Population Health, University of Oxford, New Richards Building, Old Road Campus, Oxford, OX3 7LF, UK.
Kay WangNuffield Department of Primary Care Health Sciences, University of Oxford, Oxford, UK.
Anthony HarndenNuffield Department of Primary Care Health Sciences, University of Oxford, Oxford, UK.
Ulla RäisänenNuffield Department of Primary Care Health Sciences, University of Oxford, Oxford, UK.
Lucy AbelNuffield Department of Primary Care Health Sciences, University of Oxford, Oxford, UK.

Funding

Department of Health RP-PG-1210-12012Programme Grants for Applied Research RP-PG-1210-12012
6 · The paper itself

Abstract

backgroundNo current guidance is available in the UK on the choice of preference-based measure (PBM) that should be used in obtaining health-related quality of life from children. The aim of this study is to review the current usage of PBMs for obtaining health state utility values in child and adolescent populations, and to obtain information on patient and parent-proxy respondent preferences in completing PBMs in the UK.

methodsA literature review was conducted to determine which instrument is most frequently used for child-based economic evaluations and whether child or proxy responses are used. Instruments were compared on dimensions, severity levels, elicitation and valuation methods, availability of value sets and validation studies, and the range of utility values generated. Additionally, a series of focus groups of parents and young people (11-20 years) were convened to determine patient and proxy preferences.

resultsFive PBMs suitable for child populations were identified, although only the Health Utilities Index 2 (HUI2) and Child Heath Utility 9D (CHU-9D) have UK value sets. 45 papers used PBMs in this population, but many used non-child-specific PBMs. Most respondents were parent proxies, even in adolescent populations. Reported missing data ranged from 0.5 to 49.3%. The focus groups reported their experiences with the EQ-5D-Y and CHU-9D. Both the young persons' group and parent/proxy groups felt that the CHU-9D was more comprehensive but may be harder for a proxy to complete. Some younger children had difficulty understanding the CHU-9D questions, but the young persons' group nonetheless preferred responding directly.

conclusionThe use of PBMs in child populations is increasing, but many studies use PBMs that do not have appropriate value sets. Parent proxies are the most common respondents, but the focus group responses suggest it would be preferred, and may be more informative, for older children to self-report or for child-parent dyads to respond.

Indexed as

Focus GroupsHealth StatusParentsPatient PreferenceQuality of LifeAdolescentChildChild, PreschoolCost-Benefit AnalysisData CollectionFemaleHumansInfantMaleProxySelf ReportChildrenCHU-9DEQ-5DPreference-based measuresQuality of lifeUtility

Identifiers

PMID29564713
PMCPMC5997719

What OpenQuestion holds

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Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.