Quality and acceptability of patient-reported outcome measures used in chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): a systematic review
- Kirstie L. HaywoodAffiliated withRoyal College of Nursing Research Institute, School of Health and Social Studies, University of Warwick Email author
- , Sophie StaniszewskaAffiliated withRoyal College of Nursing Research Institute, School of Health and Social Studies, University of Warwick
- , Sarah ChapmanAffiliated withRoyal College of Nursing Institute
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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).
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.
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.
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.
KeywordsChronic fatigue syndrome/myalgic encephalomyelitis Patient-reported outcome Review
- Quality and acceptability of patient-reported outcome measures used in chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): a systematic review
Quality of Life Research
Volume 21, Issue 1 , pp 35-52
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- Springer Netherlands
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- Chronic fatigue syndrome/myalgic encephalomyelitis
- Patient-reported outcome
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- Author Affiliations
- 1. Royal College of Nursing Research Institute, School of Health and Social Studies, University of Warwick, Coventry, CV4 7AL, UK
- 2. Royal College of Nursing Institute, Whichford House, Oxford Business Park South, Oxford, OX4, UK