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Patient-reported outcome measures in osteoarthritis: a systematic search and review of their use and psychometric properties
Authors:
Lundgren-Nilsson, A., Dencker, A., Palstam, A., Person, G., Horton, M. C., Escorpizo, R., Kucukdeveci, A. A., Kutlay, S., Elhan, A. H., Stucki, G., Tennant, A., and Conaghan, P. G.
Abstract:
Introduction: Patient-reported outcome measures (PROM) or self-completed questionnaires have been used to report outcomes in osteoarthritis (OA) for over 35 years. Choices will always need to be made about what should be measured and, if relevant, what would be the most appropriate PROM to use. The current study aims to describe the available PROMs used in OA and their performance quality, so that informed choices can be made about the most appropriate PROM for a particular task. Methods: The study included a systematic search for PROMs that have been in use over 17 years (period 2000-2016), and to catalogue their psychometric properties, and to present the evidence in a user-friendly fashion. Results: 78 PROMs were identified with psychometric evidence available. The domains of pain, self-care, mobility and work dominated, whereas domains such as cleaning and laundry and leisure, together with psychological and contextual factors, were poorly served. The most frequently used PROMs included the Western Ontario McMaster Osteoarthritis Index, the Short Form 36 and the Knee Disability and Osteoarthritis Outcome Score which, between them, appeared in more than 4000 papers. Most domains had at least one PROM with the highest level of psychometric evidence. Conclusion: A broad range of PROMs are available for measuring OA outcomes. Some have good psychometric evidence, others not so. Some important psychological areas such as self-efficacy were poorly served. The study provides a current baseline for what is available, and identifies the shortfall in key domains if the full biopsychosocial model is to be explored.
DOI:
10.1136/rmdopen-2018-000715
URL:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6307597/pdf/rmdopen-2018-000715.pdf
Journal:
RMD Open
issn:
2056-5933 (Print)
Publication year:
2018
pages:
e000715
Symptom status:
Cognitive/mental state
Functional status:
Physical 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:
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) AQoL - Assessment of Quality of Life (versions: AQoL-4D; AQoL-6D; AQoL-7D; AQoL-8D) AUSCAN - Australian/Canadian Hand Osteoarthritis Index BPAQ - Baecke Physical Activity Questionnaire 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) 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) CHFS - Cochin Hand Function Scale CIJSS - Chronic Illness Job Strain Scale CPSI - Chronic Pain Sleep Inventory DASH - Disabilities of the Arm, Shoulder and Hand (versions: DASH Modified; M2-DASH - Manchester modified DASH) EDAQ - Evaluation of Daily Living Questionnaire EQ-5D-3L - euroQoL 5-dimension 3-level FFI - Foot Function Index (versions: FFI-17; FFI-18; FFI-5pt; FFI-r) FIHOA - Functional Index of Hand Osteoarthritis GWBI - General Well-Being Index 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) HOOS - Hip disability and Osteoarthritis Outcome Score (versions: HOOS-12; HOOS JR - HOOS Joint Replacement) HOOS-PS - Hip disability and Osteoarthritis Outcome Score-Physical function Short form HUI-3 - Health Utilities Index-Mark 3 ICECAP - ICEpop CAPability measure (versions: ICECAP-Adult; ICECAP-Older) ICOAP - Intermittent and Constant OsteoArthritis Pain IIRS - Illness Intrusiveness Rating Scale (also IIS - Illness Intrusiveness Scale) IKHOAM - Ibadan knee OsteoArthritis outcome measure KOOS - Knee injury and Osteoarthritis Outcome Score (versions: KOOS-Child; KOOS-JR - KOOS-Joint Replacement; KOOS-12; KOOS-PF - KOOS PatelloFemoral pain and osteoarthritis) KOS - Knee Outcome Survey (versions: KOS-ADLS; KOS-ADLS-14; KOS-ADLS-17) LAI-hip - Lequesne Algofunctional Index for the severity of osteoarthritis of the hip [alias: LISH][alias: LISOH] LAI-knee - Lequesne Algofunctional Index for the severity of osteoarthritis of the knee [alias: LISK][alias: LISOK] LEAS - Lower Extremity Activity Scale LEFS - Lower Extremity Function Scale LLFDI - Late-Life Function and Disability Instrument MACTAR - McMaster-Toronto Arthritis Patient Preference Disability Questionnaire
MDHAQ - Multidimensional Health Assessment Questionnaire (10-ADL and 14-ADL versions) MHLC - Multidimensional Health Locus of Control Scale MHQ - Michigan Hand outcomes Questionnaire (versions: BriefMHQ) MHS - Mayo Hip Score MPQ - McGill Pain Questionnaire (versions MPQ-SF; SF-MPQ; LF-MPQ; MPQ-VAS)
NHP - Nottingham Health Profile OAKHQOL - Osteoarthritis Knee and Hip Quality of Life (versions: mini OAKHQOL - OAKHQOL-20 items) OA-QoL - Osteoarthritis Quality of Life Scale ODI - Oswestry Disability Index (versions: ODI 2.0; ODI 2.1a; ODI AAOS/MODEMS; chir ODI - chiropractor ODI; revised ODI; modified ODI) OES - Oxford Elbow Score OHS - Oxford Hip Score OKS - Oxford Knee Score OSS - Oxford Shoulder Score PACIC - Patient Assessment of Chronic Illness Care PCS - Pain Catastrophizing Scale (versions: PCS-Parent; PCS-Child; Postconcussion Catastrophizing Scale) PIPP - Perceived Impact of Problem Profile PREE - Patient Rated Elbow Evaluation PROMIS Anxiety PROMIS-D - PROMIS Depression PROMIS Pain (versions: short form; (cancer) pain interference; behavior; intensity; Neuropathic; Nociceptive) PROMIS-PF - PROMIS Physical Function (versions: PF-4; PF-6; PF-8; PF-10; PF-20) PRWE - Patient-Rated Wrist Evaluation [alias: PRWHE - Patient Rated Wrist/Hand Evaluation] Quick DASH - Quick Disabilities of the Arm, Shoulder and Hand (versions: Modified Quick DASH-9; Quick DASH sport) RA-WIS - Rheumatoid Arthritis-Work Instability Scale Re-PEQ - Rehabilitation Patient Experiences Questionnaire SACRAH - Score for Assessment and Quantification of Chronic Rheumatoid Affections of the Hands (versions: M-SACRAH - modified SACRAH) SAS - Short Arthritis Assessment 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) SPADI - Shoulder Pain and Disability Index WALS - Workplace Activity Limitations 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) WIQ - Walking Impairment Questionnaire 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) WOOS - Western Ontario Osteoarthritis of the Shoulder index WOSI - Western Ontario Shoulder Instability Index WPAI - Work Productivity and Activity Impairment questionnaire (versions: WPAI-AS - WPAI-Allergy Specific; WPAI-ChHD; WPAI-Chorinc Hand Dermatitis; WPAI-Lupus; WPAI-SpA - WPAI-spondyloarthritis; WPAI-UC - WPAI-Ulcerative Colitis)
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