Evidence map›Paper›PMID 23288613›Full record

ReviewQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2013

ISOQOL recommends minimum standards for patient-reported outcome measures used in patient-centered outcomes and comparative effectiveness research.

Bryce B Reeve, Kathleen W Wyrwich, Albert W Wu, Galina Velikova, Caroline B Terwee, Claire F Snyder, Carolyn Schwartz, Dennis A Revicki, Carol M Moinpour, Lori D McLeod and 13 more

Registry-linked trialAbstract readReview
PubMed Publisher
In one paragraph

Review in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT05947903 (Validation of the European Oncology Quality of Life Toolkit. A European Pilot Survey.), which is not on this map. Cited by 399 papers, 15 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
399citing papers in PubMed, 15 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.

NCT05947903 unknown statusnot on this mapstarted 2024, after this paper: background citation

Validation of the European Oncology Quality of Life Toolkit. A European Pilot Survey.

TypeobservationalSponsorFondazione IRCCS Istituto Nazionale dei Tumori, MilanoRan2024 to 2024Enrolled4,000ConditionsCancer, Survivorship, Palliative CareArmsAdministration of the EUonQoL-Kit - Active Treatment questionnaire, Administration of the EUonQoL-Kit - Survivors questionnaire, Administration of the EUonQoL-Kit - Palliative Care questionnaire
3 · Its place in the literature

Who cites it

399 citing papers in PubMed, 15 syntheses or guidelines pooled it.

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  10. Guideline for reporting systematic reviews of outcome measurement instruments (OMIs): PRISMA-COSMIN for OMIs 2024.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2024
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  13. Lived experience of patients with sleep apnea: a systematic synthesis of qualitative evidence.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2023
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  14. Assessing chemotherapy-induced peripheral neuropathy with patient reported outcome measures: a systematic review of measurement properties and considerations for future use.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2022
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  15. A review of the content and psychometric properties of cancer-related fatigue (CRF) measures used to assess fatigue in intervention studies.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2022
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339 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

23 authors.

Bryce B ReeveDepartment of Health Policy and Management, Gillings School of Global Public Health, University of North Carolina at Chapel Hill, 1101-D McGavran-Greenberg Building, 135 Dauer Drive, CB 7411, Chapel Hill, NC, 27599-7411, USA, bbreeve@email.UNC.edu.
Kathleen W Wyrwich
Albert W Wu
Galina Velikova
Caroline B Terwee
Claire F Snyder
Carolyn Schwartz
Dennis A Revicki
Carol M Moinpour
Lori D McLeod
Jessica C Lyons
William R Lenderking
Pamela S Hinds
Ron D Hays
Joanne Greenhalgh
Richard Gershon
David Feeny
Peter M Fayers
David Cella
Michael Brundage
Sara Ahmed
Neil K Aaronson
Zeeshan Butt

Funding

Department of Health RP-PG-0611-20008
6 · The paper itself

Abstract

purposeAn essential aspect of patient-centered outcomes research (PCOR) and comparative effectiveness research (CER) is the integration of patient perspectives and experiences with clinical data to evaluate interventions. Thus, PCOR and CER require capturing patient-reported outcome (PRO) data appropriately to inform research, healthcare delivery, and policy. This initiative's goal was to identify minimum standards for the design and selection of a PRO measure for use in PCOR and CER.

methodsWe performed a literature review to find existing guidelines for the selection of PRO measures. We also conducted an online survey of the International Society for Quality of Life Research (ISOQOL) membership to solicit input on PRO standards. A standard was designated as "recommended" when >50 % respondents endorsed it as "required as a minimum standard."

resultsThe literature review identified 387 articles. Survey response rate was 120 of 506 ISOQOL members. The respondents had an average of 15 years experience in PRO research, and 89 % felt competent or very competent providing feedback. Final recommendations for PRO measure standards included: documentation of the conceptual and measurement model; evidence for reliability, validity (content validity, construct validity, responsiveness); interpretability of scores; quality translation, and acceptable patient and investigator burden.

conclusionThe development of these minimum measurement standards is intended to promote the appropriate use of PRO measures to inform PCOR and CER, which in turn can improve the effectiveness and efficiency of healthcare delivery. A next step is to expand these minimum standards to identify best practices for selecting decision-relevant PRO measures.

Indexed as

Comparative Effectiveness ResearchGuidelines as TopicHumansOutcome Assessment, Health CarePatient-Centered CarePatient Outcome AssessmentPatient SatisfactionPsychometricsQuality of LifeReproducibility of ResultsResearch DesignSelf ReportSurveys and Questionnaires

Identifiers

PMID23288613

What OpenQuestion holds

Textmetadata
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.