Evidence map›Paper›PMID 21590511›Full record

SynthesisQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2012

Quality and acceptability of patient-reported outcome measures used in chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): a systematic review.

Kirstie L Haywood, Sophie Staniszewska, Sarah Chapman

Abstract readSystematic Review
PubMed Publisher
In one paragraph

Synthesis in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2012. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 49 papers, 7 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
49citing papers in PubMed, 7 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

49 citing papers in PubMed, 7 syntheses or guidelines pooled it.

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  6. Patient-reported outcome measures in older people with hip fracture: a systematic review of quality and acceptability.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2017
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  17. Reconciling validity and challenges of patient comfort and understanding: Guidelines to patient-oriented questionnaires.Health expectations : an international journal of public participation in health care and health policy · 2022
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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

3 authors.

Kirstie L HaywoodRoyal College of Nursing Research Institute, School of Health and Social Studies, University of Warwick, Coventry CV4 7AL, UK. k.l.haywood@warwick.ac.uk
Sophie Staniszewska
Sarah Chapman

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

purposeTo review the quality and acceptability of condition-specific, domain-specific and generic multi-item patient-reported outcome measures (PROMs) used in the assessment of adults with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME).

methodsSystematic literature searches were made to identify PROMs. Quality and acceptability was assessed against an appraisal framework, which captured evidence of both the thoroughness and results of evaluations: evidence of measurement (reliability, validity, responsiveness, interpretability, data quality/precision) and practical properties (feasibility, patient acceptability), and the extent of active patient involvement was sought.

resultsA total of 11 CFS/ME-specific, 55 domain-specific and 11 generic measures were reviewed. With the exception of the generic SF-36, all measures had mostly limited evidence of measurement and/or practical properties. Patient involvement was poorly reported and often cursory.

conclusionsThe quality and acceptability of reviewed PROMs is limited, and recommendations for patient-reported assessment are difficult. Significant methodological and quality issues in PROM development/evaluation were identified by the appraisal framework, which must be addressed in future research. Clear discrepancies exist between what is measured in research and how patients define their experience of CFS/ME. Future PROM development/evaluation must seek to involve patients more collaboratively to measure outcomes of importance using relevant and credible methods of assessment.

Indexed as

Outcome Assessment, Health CareAdolescentAdultFatigue Syndrome, ChronicFemaleHealth StatusHumansMaleMiddle AgedPatientsSelf ReportYoung Adult

Identifiers

PMID21590511

What OpenQuestion holds

Textmetadata
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 OpenQuestion graph.