Use and detailed metric properties of patient-reported outcome measures for rheumatoid arthritis: a systematic review covering two decades

Abstract

IntroductionThe 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.MethodsThe 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.Results125 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.ConclusionThere 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.

Future challenges in rheumatology – is telemedicine the solution?

“…measures of disease activity, functional status, mental health and QoL) for guiding the treat-to-target approach used to manage rheumatic diseases. 64 The COVID-19 pandemic and abrupt shift to virtual medical care have dramatically accelerated the implementation of PROs in rheumatology in developed countries as an important means of patient evaluation, ensuring adequate control of disease activity and response to antirheumatic treatments in the era of telemedicine. 65 A number of recent studies have shown that PROs, including disease-specific questionnaires for several rheumatic conditions [e.g.…”

Neues aus dem RABBIT-Register

“…Patientenberichtete Outcomes sind inzwischen ein fester Bestandteil klinischer Studien [ 16 ]. Auch im RABBIT-Register fragen wir die Patient:innen nach ihrem körperlichen (Wohl‑)Befinden, insbesondere zum derzeitigen Gesundheitszustand, zu Erschöpfung und Müdigkeit, Schmerzen und Schlafstörungen.…”

Application of Exploratory Factor Analysis and Item Response Theory to Validate NHANES ADL Scale in Patients Reporting Rheumatoid Arthritis

“…There are several generic and disease specific instruments used in measuring functional status among RA patients, such as the Barthel index for activities of daily living, the Groningen activity restriction scale (GARTH), the World Health Organization Disability Schedule-II (WHODAS-II), the Health Assessment Questionnaire Disability Index (HAQ-DI) Health Assessment Questionnaire II (HAQ-II), the shortened arthritis impact measurement scales (AIMS), the Multidimensional Health Assessment Questionnaire (MDHAQ-10-ADL), MDHAQ-14-ADL, and the Sickness Impact Profile (SIP-RA) to name few [ 9 , 10 , 11 , 12 , 13 , 14 , 15 , 16 , 17 , 18 , 19 ]. Some of these tools are inconsistently assessed for their psychometric properties.…”

“…Some of these tools are inconsistently assessed for their psychometric properties. The majority were assessed for reliability, some were assessed for their factor structure, test-retest reliability and responsiveness, and a few were assessed for item discrimination, difficulty, and sensitivity [ 16 , 17 , 18 , 19 ].…”