Evidence map›Paper›PMID 39699838›Full record

SynthesisJournal of patient-reported outcomes2024

A systematic review of condition-specific preference-based measures used in young people and their valuation methods.

William King, Lauren Hockley, Tomos Robinson, Angela Bate, Laura Ternent

Abstract readSystematic Review
In one paragraph

Synthesis in Journal of patient-reported outcomes, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
–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

1 citing paper in PubMed.

  1. Measurement properties of a patient-reported outcome scale for peptic ulcer: a validation study using classical test theory and generalizability theory.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026
    Article
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

5 authors.

William KingHealth Economics Group, Newcastle University Population Health Sciences Institute, Newcastle upon Tyne, UK. w.king2@newcastle.ac.uk.ORCID 0000-0001-7040-9133
Lauren HockleyNewcastle upon Tyne Hospitals NHS Foundation Trust, NHS, Newcastle upon Tyne, UK.ORCID 0009-0002-9646-4119
Tomos RobinsonHealth Economics Group, Newcastle University Population Health Sciences Institute, Newcastle upon Tyne, UK.ORCID 0000-0001-8695-9738
Angela BateNorthumbria University, Newcastle upon Tyne, UK.ORCID 0000-0001-5277-4188
Laura TernentHealth Economics Group, Newcastle University Population Health Sciences Institute, Newcastle upon Tyne, UK.ORCID 0000-0001-7056-298X

Funding

National Institute for Health and Care Research Applied Research Collaboration North East and North Cumbria NIHR200173
6 · The paper itself

Abstract

backgroundCondition-specific health-related quality-of-life (HRQoL) instruments can be more responsive and sensitive to specific conditions and diseases than generic HRQoL instruments. This systematic review aims to identify the condition-specific preference-based instruments that have been used with young people and identify how preference values have been obtained for these instruments. This review will inform future researchers about the methods used to elicit utilities for condition-specific HRQoL instruments.

methodsA comprehensive search strategy was used to identify condition-specific HRQoL instruments used in young people and the methods used to value these instruments. Published medical and health economic databases were searched from January 1990-March 2022. Articles were deemed eligible for inclusion if a condition-specific preference-based instrument was used in young people (age < 18). Screening, data extraction and quality assessment were conducted independently by at least two reviewers.

resultsAfter deduplication, a total of 4273 articles were eligible for title and abstract screening. Of these, 98 articles were eligible for full-text screening. After full-text screening, 18 articles were included in the review. Valuation studies were the most prevalent study design in the review (44%), followed by mapping studies (38%) and then other designs (18%). Among the valuation studies, the choice of HRQoL instrument, preference elicitation method, anchoring method and perspective varied considerably.

conclusionTo our knowledge, this review is the first to explore what condition-specific HRQoL instruments have been used in young people. Findings from this review could inform researchers in their choice of methods for measuring and valuing HRQoL. This review illustrates that to date there does not appear to be clear consensus of how to measure and value HRQoL in young people when using condition-specific instruments. The lack of consensus could be influenced by challenges identified in prior research such as limited guidance, ethical issues, and uncertain normative decisions regarding the choice of preference elicitation method. Ordinal methods such as discrete choice experiment and best-worst scaling appear to be preferable for use in this population.

Indexed as

Patient PreferenceQuality of LifeAdolescentHumansSurveys and QuestionnairesEconomic evaluationHealth-related quality of lifePreference elicitationSystematic review

Identifiers

PMID39699838
PMCPMC11659529

What Socratic holds

Textmetadata
LicenceCC BY
Read underepoch 390

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 Socratic graph.