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Quality and acceptability of patient-reported outcome measures used in chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): a systematic review
Authors:
Haywood, K. L., Staniszewska, S., and Chapman, S.
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
DOI:
URL:
PM:21590511; http://download.springer.com/static/pdf/49/art%253A10.1007%252Fs11136-011-9921-8.pdf?originUrl=http%3A%2F%2Flink.springer.com%2Farticle%2F10.1007%2Fs11136-011-9921-8&token2=exp=1453899344~acl=%2Fstatic%2Fpdf%2F49%2Fart%25253A10.1007%25252Fs11136-011-9921-8.pdf%3ForiginUrl%3Dhttp%253A%252F%252Flink.springer.com%252Farticle%252F10.1007%252Fs11136-011-9921-8*~hmac=fde161f4c2d5e30ac13c1d960a8c38b3d22ffcb82d19c5a0fe376f3f18c5c2ffhttps://www.ncbi.nlm.nih.gov/pubmed/21590511
Journal:
Qual Life Res
issn:
Publication year:
2012
pages:
35-52
Symptom status:
Cognitive/mental state
Functional status:
Cognitive/mental functioning
General health perceptions / HRQoL:
Health-related quality of life
Overall quality of life:
Overall quality of life
Age:
Adults (18-65)
Disease:
Diseases of and symptoms related to the musculoskeletal system and connective tissue
PRO / non-PRO:
Patient Reported Outcome
Type of measurement instrument:
1 - Questionnaires
Instrument:
ARI - Activity Restriction Index ASES - Arthritis Self-Efficacy Scale (versions: ASES-8; ASES-AS - Ankylosing Spondylitis) BDI - Beck Depression Inventory (versions: mBDI; BDI-Y; BDI-SF) BPI - Brief Pain Inventory (versions: BPI-sf; mBPI; mBPI-SF; BPI-PR - BPI-Proxy Report; mBPI-Proxy; BPI-DPN - BPI-Diabetic Painful Neuropathy; BPI-20) Brief-COPE - Coping Orientation to Problems Experienced Inventory-short version of COPE (versions: French version) BSI - Brief Symptom Inventory (versions: BSI-6; BSI-18; BSI-53) CEQ-R - Cognitive Errors Questionnaire-Revised CES-D - Centre for Epidemiologic Studies-Depression Scale (versions: CES-D-R; CES-D-8; CES-D 9; CES-D-10; CES-D-11; CES-D-13; CES-D-15; CES-D-20; CES-D-Children; CES-D-SF; CES-D m) CFSAQ - Chronic Fatigue Syndrome-Activity Questionnaire CFS - Chalder Fatigue Scale [alias: FQ - Fatigue Questionnaire][alias: FRS - Fatigue Rating Scale] CFS-CL - Chronic Fatigue Syndrome Checklist CFS-SC - Chronic Fatigue Syndrome Symptom Checklist CFS-SI - CDC Chronic Fatigue Syndrome - Symptom Inventory CFS-SL - Chronic Fatigue Syndrome Symptom List CFS-SRS - Chronic Fatigue Syndrome Symptom Rating Scale CFS-SSM - Chronic Fatigue Syndrome Symptom Severity Measure CHART - Craig Handicap Assessment and Reporting Technique CIS - Checklist Individual Strength (versions: CIS-20; CIS-20R) COPE - Coping Orientation to Problems Experienced Inventory (versions: A-COPE - Adolscent COPE; Kid-COPE; Brief-COPE - SEE Brief-COPE) DASI - Duke Activity Status Index DRF-M - Daily Record Form-Modified DSP - Derogatis Stress Profile EFS - Empirical Fatigue Scale EmpSS - Empirical Sleepiness Scale EQ-5D - EuroQoL-5 Dimensions (versions: EQ5D-VAS; Patient-Reported Health Score; EQ-5D-Pso - EQ-5D-Psoriasis) EQ-VAS - EuroQol Visual Analogue Scale ESS - Epworth Sleepiness Scale FAI / FSI - Fatigue Assessment Instrument (FAI) = Fatigue Severity Inventory (FSI) FIS / FFSS - Fatigue Impact Scale (FIS) or Fisk Fatigue Severity Score (FFSS) (versions: D-FIS or FIS-D - FIS for daily use; U-FIS - Unidimensional FIS) FrCS - Fatigue-related Cognitions Score FSS - Fatigue Severity Scale (versions: FSS-7 - 7-item version and FSS-5 - 5-item version) GHQ - General Health Questionnaire (versions: original = GHQ-60; GHQ-7; GHQ-12; GHQ-20; GHQ-28; GHQW-30; GHQ-36) GSQS - Groningen Sleep Quality Score HADS - Hospital Anxiety and Depression Scale HAP - Human Activity Profile HAQ - Health Assessment Questionnaire (versions:MHAQ - Modified HAQ; HAQ-II; HAQ-S - HAQ-spondyloarthropathies or HAQ-stiffness; HAQ-Skin; HAQ-pain; HAQ-DI) IMQ - Illness Management Questionnaire IPAQ - International Physical Activity Questionnaire (versions: IPAQ-sv; IPAQ-SF; IPAQ-WS - IPAQ-Walking Section; IPAQ-SB - IPAQ-Sedentary Behavior; IPAQ-A - IPAQ-Adolescents) IPQ - Illness Perceptions Questionnaire (versions: M-IPQ; IPQ-R; IPQ-R BCRL - IPQ-R-breast cancer-related lymphoedema; B-IPQ/BIPQ - Brief-IPQ; IPQ-Schizophrenia; BIPQ-P - BIPQ-Physician point of view; IPQ-RDE - IPQ Revised for Dental Use in Older/Elder Adults) IRQ - Illness Representations Questionnaire ISEL - Interpersonal Support Evaluation List (versions: ISEL-12; ISEL-QoL) IWS - Illness Worry Scale MAF - Multidimensional Assessment of Fatigue (versions: MAF-GFI - MAF-Global Fatigue Index) MFI - Multidimensional Fatigue Inventory (versions: MFI-20; MFI-SF) MIQ - Meaning of Illness Questionnaire MSPQ - Modified Somatic Perception Questionnaire NHP - Nottingham Health Profile PFRS - Profile of Fatigue-Related Symptoms PGI - Patient Generated Index POMS - Profile of Mood States (versions: POMS-11; POMS-14; POMS-37; POMS-65; Brief POMS; POMS-Adolescent; POMS-sf; revised POMS; POMS-F - POMS-fatigue; POMS-Bi - POMS-Bipolar) PROMIS Global Health - Patient-Reported Outcomes Measurement Information System Global Health (versions: PROMIS GSF; PROMIS GH-10) PSS - Perceived Stress Scale (versions: PSS-4; PSS-10; PSS-14; PSS Among People Livng with HIV or AIDS) QLI - Quality of Life Index [alias: Ferrans and Powers Quality of Life Index] (versions: QLI-III; QLI-D - QLI-Dialysis; QLI-CV - QLI-Cancer Version; QLI-Cardiac Version; QLI-WV - QLI Wound version) QLS - Quality of Life Scale RSES - Rosenberg Self-Esteem Scale (versions: RSES-10) SAQ - Sleep Assessment Questionnaire SCL-90 - Symptom Checklist-90 (versions: SCL-92) SDQ - Sleep Disorders Questionnaire SDQ - Sleep Disturbance Questionnaire SDQ - Somatic Discomfort Questionnaire SDS - Zung Self-rating Depression Scale (also: ZSDS ; versions: mZSDS) SES - Self-efficacy Scale (versions: CSES - Child SES) SF-36 - 36-item Short Form Health Survey [alias: RAND-36][alias: MOS SF-36]] (versions: VSF-36 LoA - Visual Version of the SF-36 Limitations of Physical Activities domain; VR-36 - Veterans SF-36) database.cosmin.nl SF-36v2 - Short Form 36 version 2 SIP - Sickness Impact Profile (versions: SIP-8; SIP-68; SIP-136; SIP-SV; UKSIP; SIP/ALS-19) SMART - Subjective Mental Ability Rating Test SMHSQ - St. Mary’s Hospital Sleep Questionnaire SSS - Stanford Sleepiness Scale STAI - State-Trait Anxiety Inventory (versions: STAI-X - STAI Form X; STAI-Y - STAI Form Y; STAI sf; STAI-4; STAI-6) STAS - Spielberger Trait Anger Scale UCL - Utrecht Coping List [alias: UCQ - Utrecht Coping Questionnaire] WHOQOL-100 - World Health Organization Quality Of Life Assessment Instrument 100 items WHOQOL-BREF - World Health Organization Quality of Life questionnaire–Abbreviated Questionnaire (versions: WHOQOL-HIV-BREF; WHOQOL-BREF dialysis) WHYMPI - West Haven-Yale Multidimensional Pain Inventory WMFI - Wood Mental Fatigue Inventory WOC - Ways of Coping Inventory (versions: WOC-CA - WOC-Cancer Version)
