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Quality of Life Research
Erschienen in: Quality of Life Research 1/2012

01.02.2012 | Review

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

verfasst von: Kirstie L. Haywood, Sophie Staniszewska, Sarah Chapman

Erschienen in: Quality of Life Research | Ausgabe 1/2012

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Abstract

Purpose

To 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).

Methods

Systematic 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.

Results

A 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.

Conclusions

The 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.
Vorheriger Artikel Constantly Proving The Opposite? A test of CPTO using a broad time horizon and correcting for discounting
Nächster Artikel Quality of life of adolescents with autism spectrum disorders: concordance among adolescents’ self-reports, parents’ reports, and parents’ proxy reports

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Metadaten
Titel
Quality and acceptability of patient-reported outcome measures used in chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): a systematic review
verfasst von
Kirstie L. Haywood
Sophie Staniszewska
Sarah Chapman
Publikationsdatum
01.02.2012
Verlag
Springer Netherlands
Erschienen in
Quality of Life Research / Ausgabe 1/2012
Print ISSN: 0962-9343
Elektronische ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-011-9921-8

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