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Quality of Life Research

, Volume 21, Issue 1, pp 35–52 | Cite as

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

  • Kirstie L. HaywoodEmail author
  • Sophie Staniszewska
  • Sarah Chapman
Review

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.

Keywords

Chronic fatigue syndrome/myalgic encephalomyelitis Patient-reported outcome Review 

Abbreviations

CFS/ME

Chronic fatigue syndrome/myalgic encephalomyelitis

PROMs

Patient-reported outcome measures

Notes

Acknowledgements

The authors would like to thank Jacoby Peterson (JP) for her contribution to the data extraction. GUS Charitable Trust to support research associated with the PRIME initiative (Partnership for Research in ME/CFS http://prime-cfs.org/).

Conflict of interest

None.

Supplementary material

11136_2011_9921_MOESM1_ESM.pdf (190 kb)
Supplementary material 1 (PDF 190 kb)

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Copyright information

© Springer Science+Business Media B.V. 2011

Authors and Affiliations

  • Kirstie L. Haywood
    • 1
    Email author
  • Sophie Staniszewska
    • 1
  • Sarah Chapman
    • 2
  1. 1.Royal College of Nursing Research Institute, School of Health and Social StudiesUniversity of WarwickCoventryUK
  2. 2.Royal College of Nursing InstituteOxfordUK

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