Patient-Reported Outcome Measures (PROMS) are questionnaires that researchers and clinicians ask patients to complete to assess the value of a treatment. The limitation of these measures were highlighted in 2011 by critics of the PACE trial.

Researchers from England have reviewed CFS/ME-specific,  domain-specific and generic measures used in  the assessment of adults with CFS/ME.

With the exception of the generic SF-36, they found that all measures had mostly limited evidence of measurement and/or practical properties. Patient involvement in their design was poorly reported and often cursory.

They concluded that 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.

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

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