COSMIN database

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
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=fde161f4c2d5e30ac13c1d960a8c38b3d22ffcb82d19c5a0fe376f3f18c5c2ff
https://www.ncbi.nlm.nih.gov/pubmed/21590511
Journal:
Qual Life Res
Publication year:
2012
pages:
35-52
Symptom status:
Cognitive/mental state
Emotional state
Physical state
Functional status:
Cognitive/mental functioning
Physical functioning
Role functioning
General health perceptions / HRQoL:
Health-related quality of life
Overall quality of life:
Overall quality of life
Age:
Adults (18-65)
Seniors (65+)
Disease:
Diseases of and symptoms related to the musculoskeletal system and connective tissue
Diseases of and symptoms related to the nervous system
PRO / non-PRO:
Patient Reported Outcome
Type of measurement instrument:
1 - Questionnaires
2 - Interviews
Instrument:
ARI - Activity Restriction Index
ASES - Arthritis Self-Efficacy Scale
BDI - Beck Depression Inventory   [see: ZUYD (NL)]
BPI - Brief Pain Inventory
BSI - Brief Symptom Inventory
CEQ-R - Cognitive Errors Questionnaire-Revised
CES-D - Centre for Epidemiologic Studies-Depression Scale   [see: ZUYD (NL)]
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   [see: ZUYD (NL)]
CIS - Checklist Individual Strength   [see: ZUYD (NL)]
COPE AND Brief-Cope (short version of COPE) - Coping Orientation to Problems Experienced Inventory   [see: proqolid]
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   [see: ZUYD (NL)]
EQ-VAS - EuroQol Visual Analogue Scale
ESS - Epworth Sleepiness Scale
FAI / FSI - Fatigue Assessment Instrument (FAI) = Fatigue Severity Inventory (FSI)
FIS - Fatigue Impact Scale
FrCS - Fatigue-related Cognitions Score
FSS - Fatigue Severity Scale
GHQ - General Health Questionnaire
GSQS - Groningen Sleep Quality Score
HADS - Hospital Anxiety and Depression Scale   [see: ZUYD (NL)]
HAP - Human Activity Profile
HAQ (Also MHAQ)- Health Assessment Questionnaire (Also Modified Health Assessment Questionnaire)   [see: ZUYD (NL)]
IMQ - Illness Management Questionnaire
IPAQ - International Physical Activity Questionnaire   [see: ZUYD (NL)]
IPQ - Illness Perceptions Questionnaire (ALSO IPQ-R - IPQ revised)
IRQ - Illness Representations Questionnaire
ISEL - Interpersonal Support Evaluation List
IWS - Illness Worry Scale
MAF - Multidimensional Assessment of Fatigue
MFI - Multidimensional Fatigue Inventory   [see: ZUYD (NL)]
MIQ - Meaning of Illness Questionnaire
MSPQ - Modified Somatic Perception Questionnaire
NHP - Nottingham Health Profile   [see: ZUYD (NL)]
PFRS - Profile of Fatigue-Related Symptoms
PGI - Patient Generated Index
POMS - Profile of Mood States
PROMIS HAQ - Patient-Reported Outcomes Measurement Information System-Health Assessment Questionnaire
PSS - Perceived Stress Scale
QLI - Quality of Life Index [alias: Ferrans and Powers Quality of Life Index]
QLS - Quality of Life Scale
RSES - Rosenberg Self-Esteem Scale
SAQ - Sleep Assessment Questionnaire
SCL-90 - Symptom Checklist-90
SDQ - Sleep Disorders Questionnaire
SDQ - Sleep Disturbance Questionnaire
SDQ - Somatic Discomfort Questionnaire
SDS - Zung Self-rating Depression Scale
SES - Self-efficacy Scale
SF-36 - 36-item Short Form Health Survey [alias: RAND-36][alias: Medical Outcomes Study (MOS) SF-36]]   [see: proqolid, ZUYD (NL), also see: https://database.cosmin.nl/?utf8=%E2%9C%93&search_field=all_fields&q=SF-36+-+36-item+Short+Form+Health+Survey++%5Balias%3A+RAND-36%5D%5Balias%3A+Medical+Outcomes+Study+%28MOS%29+SF-36%5D%5D]
SF-36v2 - Short Form 36 version 2
SIP - Sickness Impact Profile   [see: ZUYD (NL)]
SMART - Subjective Mental Ability Rating Test
SMHSQ - St. Mary’s Hospital Sleep Questionnaire
SSS - Stanford Sleepiness Scale
STAI - State-Trait Anxiety Inventory
STAS - Spielberger Trait Anger Scale
UCL - Utrecht Coping List [alias: UCQ - Utrecht Coping Questionnaire]   [see: ZUYD (NL)]
WHOQOL-100 - World Health Organization Quality Of Life Assessment Instrument 100 items
WHOQOL-BREF - World Health Organization Quality of Life questionnaire–Abbreviated Questionnaire [alias: WHO-QOL BREF]   [see: ZUYD (NL)]
WHYMPI - West Haven-Yale Multidimensional Pain Inventory
WMFI - Wood Mental Fatigue Inventory
WOC - Ways of Coping Inventory