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Use and detailed metric properties of patient-reported outcome measures for rheumatoid arthritis: a systematic review covering two decades
Authors:
Küçükdeveci, A. A., Elhan, A. H., Erdoğan, B. D., Kutlay, Ş, Gökmen, D., Ateş, C., Yüksel, S., Lundgren-Nilsson, A., Escorpizo, R., Stucki, G., Tennant, A., and Conaghan, P. G.
Abstract:
INTRODUCTION: The importance of patient-reported outcome measures (PROMs) for rheumatoid arthritis (RA) clinical studies has been recognised for many years. The current study aims to describe the RA PROMs used over the past 20 years, and their performance metrics, to underpin appropriate tool selection. METHODS: The study included a systematic search for PROMs that have been in use over the period 2000-2019, with detailed documentation of their psychometric properties, and a user-friendly presentation of the extensive evidence base. RESULTS: 125 PROMs were identified with psychometric evidence available. The domains of pain, fatigue, emotional functions, mobility, physical functioning and work dominated, with self-efficacy and coping as personal factors. Domains such as stiffness and sleep were poorly served. The most frequently used PROMs included the Health Assessment Questionnaire Disability Index (HAQ), the Short Form 36 (SF-36), the EuroQoL and the Modified HAQ which, between them, appeared in more than 3500 papers. Strong psychometric evidence was found for the HAQ, and the SF-36 Physical Functioning and Vitality (fatigue) domains. Otherwise, all domains except stiffness, sleep, education and health utility, had at least one PROM with moderate level of psychometric evidence. CONCLUSION: There is a broad range of PROMs for measuring RA outcomes, but the quality of psychometric evidence varies widely. This work identifies gaps in key RA domains according to the biopsychosocial model.
DOI:
10.1136/rmdopen-2021-001707
URL:
https://rmdopen.bmj.com/content/rmdopen/7/2/e001707.full.pdf
Journal:
RMD Open
issn:
2056-5933
Publication year:
2021
pages:
Symptom status:
Emotional 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:
5T-PROs - Patient Reported Outcomes Thermometer ABES - Arthritis Body Experience Scale ABILHAND (versions: ABILHAND-ULA) AHI - Arthritis Helplessness Index AIMS2 - Arthritis Impact Measurement Scales 2 (versions: AIMS2-SF; AS-AIMS2 - Ankylosing Spondylitis AIMS) AIMS - Arthritis Impact Measurement Scales (versions; sAIMS; shortened AIMS; SF-AIMS) AIS - Athens Insomnia Scale ASES - Arthritis Self-Efficacy Scale (versions: ASES-8; ASES-AS - Ankylosing Spondylitis) AUSCAN - Australian/Canadian Hand Osteoarthritis Index BRAF-MDQ - Bristol Rheumatoid Arthritis Fatigue Multi-Dimensional Questionnaire BRCS - Brief Resilient Coping Scale 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) CFS - Chalder Fatigue Scale [alias: FQ - Fatigue Questionnaire][alias: FRS - Fatigue Rating Scale] CHFS - Cochin Hand Function Scale CQ-Index RA - Consumer Quality Index Rheumatoid Arthritis CQR - Compliance Questionnaire-Rheumatology (versions: CQR-5) CSHQ-RA - Cedars-Sinai Health Related Quality of Life for Rheumatoid Arthritis instrument (versions: CSHQ-RA-R; CSHQ-RA-SF) DASH - Disabilities of the Arm, Shoulder and Hand (versions: DASH Modified; M2-DASH - Manchester modified DASH) DASS - Depression, Anxiety and Stress Scale (Versions: DASS-42 and DASS-21) EDAQ - Evaluation of Daily Living Questionnaire EIS - Emotional Intimacy Scale ENAT - Educational Needs Assessment Tool (versions: ENAT-2) EQ-5D - EuroQoL-5 Dimensions (versions: EQ5D-VAS; Patient-Reported Health Score; EQ-5D-Pso - EQ-5D-Psoriasis) ESS - Exercise Self-efficacy Scale EWPS - Endicott Work Productivity Scale FACIT-F - Functional Assessment of Chronic Illness Therapy- Fatigue Scale FFI - Foot Function Index (versions: FFI-17; FFI-18; FFI-5pt; FFI-r) FHSQ - Foot Health Status Questionnaire FIS - Foot Impact Scale Flare-RA - The Flare Instrument FSS - Fatigue Severity Scale (versions: FSS-7 - 7-item version and FSS-5 - 5-item version) HADS - Hospital Anxiety and Depression Scale HAQ - Health Assessment Questionnaire (versions:MHAQ - Modified HAQ; HAQ-II; HAQ-S - HAQ-spondyloarthropathies or HAQ-stiffness; HAQ-Skin; HAQ-pain; HAQ-DI) HDFQ - Heart Disease Fact Questionnaire (versions: HDFQ-RA) HUI-2 - Health Utilities Index Mark 2 HUI-3 - Health Utilities Index-Mark 3 IPAQ - International Physical Activity Questionnaire (versions: IPAQ-sv; IPAQ-SF; IPAQ-WS - IPAQ-Walking Section; IPAQ-SB - IPAQ-Sedentary Behavior; IPAQ-A - IPAQ-Adolescents) ISMI - Internalised Stigma of Mental Illness (ISMI-RA - ISMI Rheumatoid Arthritis) JPBA - Joint Protection Behaviour Assessment (versions: JPBA-S - JPBA-short) JSS - Jenkins Sleep Scale [ZIE JSPS - Jenkins Sleep Problems Scale] KAS - Knowledge Assessment Scale (versions: RA-KAS) MACTAR - McMaster-Toronto Arthritis Patient Preference Disability Questionnaire
MAF - Multidimensional Assessment of Fatigue (versions: MAF-GFI - MAF-Global Fatigue Index) MAL - Measure of Activity Limitation MAP-HAND - Measure of Activity Performance of the Hand MARS - Medication Adherence Report Scale (versions: MARS-5; MARS-9) MDHAQ - Multidimensional Health Assessment Questionnaire (10-ADL and 14-ADL versions) MFA - Musculoskeletal Function Assessment (versions: SMFA) MFI - Multidimensional Fatigue Inventory (versions: MFI-20; MFI-SF) MHQ - Michigan Hand outcomes Questionnaire (versions: BriefMHQ) MMAS/Morisky Scale - Morisky Medication Adherence Scale [alias: MAS] (MIAS - MMAS adapted to specify insuline adherence) MOS-Short Form McGill pain questionnaire MOS-Sleep - Medical Outcomes Study Sleep Scale MPQ - McGill Pain Questionnaire (versions MPQ-SF; SF-MPQ; LF-MPQ; MPQ-VAS)
MSK-HQ - Musculoskeletal Health Questionnaire NHP - Nottingham Health Profile OES - Oxford Elbow Score PainDETECT PCCoc/rheum - Person Centred Care in Outpatient Clinics/Rheumatol PDQ - Perceived Deficits Questionnaire (versions: PDQ-SF) PHCPCS - Patient-Health Care Provider Communication Scale PI-HAQ - Personal Impact Health Assessment Questionnaire 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 Fatigue (versions: Short Form (v.1.0); Fatigue Multiple Sclerosis; Cancer fatigue) PROMIS Paediatric Pain (versions: PROMIS PIS-proxy - PROMIS-Pain Interference Scale-proxy) PROMIS Pain (versions: short form; (cancer) pain interference; behavior; intensity; Neuropathic; Nociceptive) PROMIS Physical Function (versions: PF-4; PF-6; PF-8; PF-10; PF-20) PROMIS Profiles (versions: 10; 29; 43; 57; 29+2) PS-ADL - Performance and Satisfaction in Activities of Daily Living PSLS - Patient Specific Leisure Scale PVS - Psychological Vulnerability Scale QoL-RA - Quality of Life-Rheumatoid Arthritis Scale Quick DASH - Quick Disabilities of the Arm, Shoulder and Hand (versions: Modified Quick DASH-9; Quick DASH sport) QWB - Quality of Well-Being Scale (QWB-IA - QWB-interview-Administered) RADAI - Rheumatoid Arthritis Disease Activity Index (versions: RADAI-5; RADAI-SF) RAEH - Rheumatoid Arthritis Empowerment Scale RA-FQ - Rheumatoid Arthritis Flare Questionnaire RAID - Rheumatoid Arthritis Impact of Disease RAI - Rheumatology Attitude Index RAOS - Rheumatoid Arthritis Outcome Score RAPID 3 - Routine Assessment of Patient Index Data 3 RAPS - Rheumatoid Arthritis Pain Scale RAQoL - Rheumatoid Arthritis Quality of Life RASE - Rheumatoid Arthritis Self Efficacy Scale RA-WIS - Rheumatoid Arthritis-Work Instability Scale RHDA - Rheumatoid Hand Disability Scale ROAD - Recent Onset Arthritis Disability Questionnaire, RPQ - Risk Perception Questionnaire SACRAH - Score for Assessment and Quantification of Chronic Rheumatoid Affections of the Hands (versions: M-SACRAH - modified SACRAH) SAFE-Q - Self-Administered Foot Evaluation Questionnaire SCBS - Self-Care Behaviours Scale SF-12 - 12-item Short Form Health Survey [alias: RAND-12] (versions: SF-12v2; VR-12 - Veterans SF-12; SF-12 MCS; SF-12 PCS) 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-6D - Short-Form 6D (derived from SF-36 or F-12) SFA - Shoulder Function Assessment SIAQ - Self-Injection Assessment Questionnaire SPS - Stanford Presenteeism Scales (versions: SPS-6; SPS-13) SVS - Subjective Vitality Scale VanderBilt Pain Management Inventory VLA - Valued Life Activities Disability Questionnaire (versions: S-VLA - Short Form) VOLP - Valuation of Lost Productivity WALS - Workplace Activity Limitations Scale Wfun - Work Functioning Impairment Scale WHODAS II - World Health Organization Disability Assessment Schedule II (versions: WHODAS-12) WHOQOL-BREF - World Health Organization Quality of Life questionnaire–Abbreviated Questionnaire (versions: WHOQOL-HIV-BREF; WHOQOL-BREF dialysis) WLQ - Work Limitations Questionnaire (version: WLQ-25 - 25 items; WLQ-16 items) WOMAC - Western Ontario and McMaster Universities Osteoarthritis Index (versions: Individualized WOMAC; WOMAC-Likert Scale; WOMACsf; WOMAC-12; WOMACv3, foot and ankle; R-WOMAC - Reduced WOMAC; ShortMAC; Modified WOMAC)
