Evidence map›Paper›PMID 33738710›Full record

SynthesisQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2021

Enhancing validity, reliability and participation in self-reported health outcome measurement for children and young people: a systematic review of recall period, response scale format, and administration modality.

L Coombes, K Bristowe, C Ellis-Smith, J Aworinde, L K Fraser, J Downing, M Bluebond-Langner, L Chambers, F E M Murtagh, R Harding

Registry-linked trialAbstract readSystematic Review
PubMed Full text at PMC Publisher
In one paragraph

Synthesis in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT07102433 (CHESS - Complexity and Outcomes in Health, Education, and Social Support Among Children and Young People With Life-limiting Conditions), which is not on this map. Cited by 71 papers, 5 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
71citing papers in PubMed, 5 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.

NCT07102433 recruitingnot on this mapstarted 2025, after this paper: background citation

CHESS - Complexity and Outcomes in Health, Education, and Social Support Among Children and Young People With Life-limiting Conditions: Establishing a Multisectoral Collaboration and Conceptual Framework to Advance Evidence and Practice.

TypeobservationalSponsorKing's College LondonRan2025 to 2026Enrolled170ConditionsComplex Care, Medical Complexity, Pediatrics, Life-limiting IllnessArmsChildren and young people with life-limiting conditions, their parents/carers, and professionals across healthcare, education, and social care sectors.
3 · Its place in the literature

Who cites it

71 citing papers in PubMed, 5 syntheses or guidelines pooled it.

  1. Pooled it
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  3. Updating our understanding of health-related quality of life issues in children with cancer: a systematic review of patient-reported outcome measures and qualitative studies.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2023
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  11. Proxy- and Patient-Reported Outcome Measures in Cleft Lip and/or Palate Under 8 Years of Age: A Scoping Review.The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association · 2026
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  18. Health-related quality of life experiences in children with bladder exstrophy-epispadias complex: a Swedish focus group study.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026
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11 more citing papers are in PubMed but not listed here.

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

10 authors.

L CoombesKing's College London, Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care, Cicely Saunders Institute, London, UK. lucy.coombes@kcl.ac.uk.ORCID http://orcid.org/0000-0002-7833-1016
K BristoweKing's College London, Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care, Cicely Saunders Institute, London, UK.
C Ellis-SmithKing's College London, Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care, Cicely Saunders Institute, London, UK.
J AworindeKing's College London, Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care, Cicely Saunders Institute, London, UK.
L K FraserMartin House Research Centre, Department of Health Sciences, University of York, York, UK.
J DowningKing's College London, Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care, Cicely Saunders Institute, London, UK.
M Bluebond-LangnerUCL Great Ormond Street Institute of Child Health, Louis Dundas Centre for Children's Palliative Care, University College London, London, UK.
L ChambersTogether for Short Lives, Bristol, UK.
F E M MurtaghWolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, Hull, UK.
R HardingKing's College London, Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care, Cicely Saunders Institute, London, UK.

Funding

H2020 European Research Council 772635
6 · The paper itself

Abstract

introductionSelf-report is the gold standard for measuring children's health-related outcomes. Design of such measures is complex and challenging. This review aims to systematically appraise the evidence on recall period, response scale format, mode of administration and approaches needed to enable children and young people < 19 years to participate in valid and reliable self-reporting of their health outcomes.

methodPsycInfo, Medline, CINAHL and Embase were searched from 1 January 1990 to 15 March 2020, and citation searching undertaken in Scopus. Articles were included if they were primary research or case reports of ≥ 3 participants reporting the following: recall period, response scale selection, administration modality. Quality was assessed using QualSyst, and results synthesised narratively. This review was conducted and reported according to PRISMA guidelines.

results81 of 13,215 retrieved articles met the inclusion criteria. Children < 5 years old cannot validly and reliably self-report health outcomes. Face scales demonstrate better psychometric properties than visual analogue or Likert scales. Computerised and paper scales generally show equivalent construct validity. Children prefer computerised measures. Children ≤ 7 years old think dichotomously so need two response options. Those > 8 years old can reliably use a 3-point scale.

conclusionThe results of this review have both clinical and research implications. They can be used to inform appropriate choice of PROM for use with CYP in the clinical setting. We also give eight recommendations for future development of self-reported outcome measures for children and young people.

Indexed as

Patient Reported Outcome MeasuresChildChild, PreschoolHumansInfantOutcome Assessment, Health CarePsychometricsQuality of LifeReproducibility of ResultsSelf ReportChildCognitionHealthcareOutcome AssessmentPsychometricsQuestionnaire

Identifiers

PMID33738710
PMCPMC8233251

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

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.