Evidence map›Paper›PMID 41920378›Full record

ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2026

Measuring health-related quality of life in infants and toddlers: conceptual challenges and proposed recommendations.

Philip A Powell, Fanni Rencz, Jill Carlton, Simone Schieskow, Tessa Peasgood, Brendan Mulhern, Aureliano Finch, Mike Herdman, Janine Verstraete

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Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing 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

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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

2 citing papers in PubMed.

  1. Article
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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

9 authors.

Philip A PowellSchool of Medicine and Population Health, University of Sheffield, Sheffield, UK. p.a.powell@sheffield.ac.uk.
Fanni RenczEuroQol Research Foundation, Rotterdam, The Netherlands.
Jill CarltonSchool of Medicine and Population Health, University of Sheffield, Sheffield, UK.
Simone SchieskowDepartment of Health Economics and Health Care Management, Faculty of Health Science, Bielefeld University, Bielefeld, Germany.
Tessa PeasgoodSchool of Medicine and Population Health, University of Sheffield, Sheffield, UK.
Brendan MulhernCentre for Health Economics Research and Evaluation, University of Technology Sydney, Sydney, Australia.
Aureliano FinchEuroQol Research Foundation, Rotterdam, The Netherlands.
Mike HerdmanSaw Swee Hock School of Public Health, National University of Singapore, Singapore, Singapore.
Janine VerstraeteDepartment of Paediatrics and Child Health, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa.

Funding

EuroQol Research Foundation EQ365
6 · The paper itself

Abstract

purposeMeasuring health-related quality of life (HRQoL) in the very young (i.e., infants and toddlers, aged 0–47 months) presents unique conceptual and methodological challenges. As infants and toddlers cannot reliably self-report their HRQoL, observer inference is necessary. This raises questions about which concepts should be included; how to manage proxy reporting; and how to capture genuine variations in HRQoL, not changes in development or assessment. This commentary outlines six key challenges in measuring infant and toddler HRQoL and details eight proposed recommendations for HRQoL researchers.

methodsThe piece draws on insights from the EuroQol Toddler and Infant Populations (EQ-TIPS) project, aimed to develop a generic preference-weighted measure (PWM) of HRQoL for infants and children, but has broader applicability to HRQoL measurement in the very young. Key issues addressed include: (i) what concepts to measure; (ii) how to identify which concepts matter to very young children; (iii) managing proxy reporting and reducing bias; (iv) accounting for rapid developmental changes; (v) managing continuity across life-course instruments; and (vi) separating child HRQoL from family spillover effects.

resultsProposed recommendations include greater consensus on a core HRQoL model; prioritising primary caregiver perspectives; justifying and operationalising observable aspects of subjective HRQoL; careful design to capture genuine HRQoL, not developmental change or caregiver spillover; and developing measurement systems to prioritise age-based sensitivity or comparability across time.

conclusionThese recommendations offer a foundation for future consensus-building and research to refine and harmonise best practices in infant and toddler HRQoL measurement, particularly for use in health technology assessment.

Indexed as

Health StatusQuality of LifeChild, PreschoolHumansInfantInfant, NewbornProxyPsychometricsSurveys and QuestionnairesEarly childhoodHealth-related quality of lifeHealth technology assessmentObserver-reported outcomesPreference-weighted measuresProxy reporting

Identifiers

PMID41920378
PMCPMC13043596

What Socratic holds

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LicenceCC BY
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Registered trials

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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.