Quality and acceptability of patient-reported outcome measures used in chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): a systematic review.
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...
| Publicado en: | Quality of Life Research Vol. 21; no. 1; pp. 35 - 53 |
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| Autores principales: | , , , , , |
| Formato: | research systematic review Journal Article |
| Publicado: |
Springer Nature
Feb2012
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=104625075&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 104625075 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 09629343 GPQ jtl: Quality of Life Research issn: 09629343 maglogo: N pubinfo: dt: Feb2012 vid: 21 iid: 1 pid: 237 pub: Springer Nature place: New York, New York artinfo: ui: 104625075 NLM21590511 2011424180 10.1007/s11136-011-9921-8 NLM21590511 104625075 ppf: 35 ppct: 18 formats: fmt: @attributes: type: P tig: atl: Quality and acceptability of patient-reported outcome measures used in chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): a systematic review. aug: au: Haywood KL Staniszewska S Chapman S Haywood, Kirstie L Staniszewska, Sophie Chapman, Sarah affil: Royal College of Nursing Research Institute, School of Health and Social Studies, University of Warwick, Coventry CV4 7AL, UK sug: subj: Fatigue Syndrome, Chronic Psychosocial Factors Outcome Assessment Patients Psychosocial Factors Self Report Standards Adolescence Adult Fatigue Syndrome, Chronic Physiopathology Female Health Status Human Male Middle Age Young Adult Adolescent: 13-18 years Adult: 19-44 years Middle Aged: 45-64 years Female Male ab: 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. pubtype: Academic Journal doctype: research systematic review Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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