Evidence map›Paper›PMID 36656407›Full record

SynthesisJournal of patient-reported outcomes2023

A critical evaluation of the content validity of patient-reported outcome measures assessing health-related quality of life in children with cancer: a systematic review.

Maria Rothmund, Andreas Meryk, Gerhard Rumpold, Roman Crazzolara, Samantha Sodergren, Anne-Sophie Darlington, David Riedl, EORTC Quality of Life Group

Abstract readSystematic Review
In one paragraph

Synthesis in Journal of patient-reported outcomes, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers, 3 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
13citing 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

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

  1. Pooled it
  2. Pooled it
  3. Pooled it
  4. Review
  5. Article
  6. Article
  7. Patient-reported Outcome Measures in Pediatric Orthopaedics.Journal of the Pediatric Orthopaedic Society of North America · 2025
    Review
  8. Article
  9. Article
  10. Commentary: Without Values, Complexity is Reduced to Mathematics.Journal of evaluation in clinical practice · 2025
    Article
  11. Article
  12. Article
  13. 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

8 authors.

Maria RothmundDepartment of Psychiatry, Psychotherapy, Psychosomatics and Medical Psychology, University Clinic of Psychiatry II, Medical University Innsbruck, Innsbruck, Austria. Maria-Sophie.Rothmund@i-med.ac.at.ORCID 0000-0002-5299-9165
Andreas MerykDepartment of Pediatrics I, Medical University Innsbruck, Innsbruck, Austria.
Gerhard RumpoldDepartment of Psychiatry, Psychotherapy, Psychosomatics and Medical Psychology, University Clinic of Psychiatry II, Medical University Innsbruck, Innsbruck, Austria.
Roman CrazzolaraDepartment of Pediatrics I, Medical University Innsbruck, Innsbruck, Austria.
Samantha SodergrenSchool of Health Sciences, University of Southampton, Southampton, UK.
Anne-Sophie DarlingtonSchool of Health Sciences, University of Southampton, Southampton, UK.
David RiedlDepartment of Psychiatry, Psychotherapy, Psychosomatics and Medical Psychology, University Clinic of Psychiatry II, Medical University Innsbruck, Innsbruck, Austria.
EORTC Quality of Life Group

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundWith increasing survival rates in pediatric oncology, the need to monitor health-related quality of life (HRQOL) is becoming even more important. However, available patient-reported outcome measures (PROMs) have been criticized. This review aims to systematically evaluate the content validity of PROMs for HRQOL in children with cancer.

methodsIn December 2021, a systematic literature search was conducted in PubMed. PROMs were included if they were used to assess HRQOL in children with cancer and had a lower age-limit between 8 and 12 years and an upper age-limit below 21 years. The COSMIN methodology for assessing the content validity of PROMs was applied to grade evidence for relevance, comprehensiveness, and comprehensibility based on quality ratings of development studies (i.e., studies related to concept elicitation and cognitive interviews for newly developed questionnaires) and content validity studies (i.e., qualitative studies in new samples to evaluate the content validity of existing questionnaires).

resultsTwelve PROMs were included. Due to insufficient patient involvement and/or poor reporting, the quality of most development studies was rated 'doubtful' or 'inadequate'. Few content validity studies were available, and these were mostly 'inadequate'. Following the COSMIN methodology, evidence for content validity was 'low' or 'very low' for almost all PROMs. Only the PROMIS Pediatric Profile had 'moderate' evidence. In general, the results indicated that the PROMs covered relevant issues, while results for comprehensiveness and comprehensibility were partly inconsistent or insufficient. DISCUSSION: Following the COSMIN methodology, there is scarce evidence for the content validity of available PROMs for HRQOL in children with cancer. Most instruments were developed before the publication of milestone guidelines and therefore were not able to fulfill all requirements. Efforts are needed to catch up with methodological progress made during the last decade. Further research should adhere to recent guidelines to develop new instruments and to strengthen the evidence for existing PROMs.

Indexed as

NeoplasmsQuality of LifeChildHumansPatient Reported Outcome MeasuresQualitative ResearchSurveys and QuestionnairesChildhood cancerContent validityPatient-reported outcome measuresPatient-reported outcomesPediatric oncologyPsychometricsQuestionnaire development

Identifiers

PMID36656407
PMCPMC9851583

What OpenQuestion holds

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LicenceCC BY
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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.