Patient assessment of disease activity in rheumatoid arthritis (RA) may be useful in clinical practice, offering a patient-friendly, location independent, and a time-efficient and cost-efficient means of monitoring the disease. The objective of this study was to identify patient-reported outcome measures (PROMs) to assess disease activity in RA and to evaluate the measurement properties of these measures. Systematic literature searches were performed in the PubMed and EMBASE databases to identify articles reporting on clinimetric development or evaluation of PROM-based instruments to monitor disease activity in patients with RA. 2 reviewers independently selected articles for review and assessed their methodological quality based on the Consensus-based Standards for the selection of health Measurement Instruments (COSMIN) recommendations. A total of 424 abstracts were retrieved for review. Of these abstracts, 56 were selected for reviewing the full article and 34 articles, presenting 17 different PROMs, were finally included. Identified were: Rheumatoid Arthritis Disease Activity Index (RADAI), RADAI-5, Patient-based Disease Activity Score (PDAS) I & II, Patient-derived Disease Activity Score with 28-joint counts (Pt-DAS28), Patient-derived Simplified Disease Activity Index (Pt-SDAI), Global Arthritis Score (GAS), Patient Activity Score (PAS) I & II, Routine Assessment of Patient Index Data (RAPID) 2–5, Patient Reported Outcome-index (PRO-index) continuous (C) & majority (M), Patient Reported Outcome CLinical ARthritis Activity (PRO-CLARA). The quality of reports varied from poor to good. Typically 5 out of 10 clinimetric domains were covered in the validations of the different instruments. The quality and extent of clinimetric validation varied among PROMs of RA disease activity. The Pt-DAS28, RADAI, RADAI-5 and RAPID 3 had the strongest and most extensive validation. The measurement properties least reported and in need of more evidence were: reliability, measurement error, cross-cultural validity and interpretability of measures.

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BackgroundPatient involvement and personalisation of healthcare has become increasingly important in managing chronic diseases. Knowledge about their disease and its treatment is an important precondition for patients to be able to be involved in their own care.[1] Hence, EULAR recommends education to be an integral and continuous element of Rheumatoid Arthritis (RA) management, so that patient can be involved in their RA care.An instrument to assess patients' knowledge about their disease and its treatment can provide insight into the effectiveness of healthcare professionals' education efforts. Moreover, it can be used as an instrument to personalize education based on individual patients' knowledge gaps. Currently available patient knowledge questionnaires were developed before the introduction of biologicals as well as treat to target strategies in rheumatoid arthritis (RA). Therefore we started the development and validation of an RA knowledge questionnaire for patients.ObjectivesTo propose an instrument to measure factual disease related knowledge in RA patients with additional focus on knowledge related to modern treatment methods.MethodsContent to be covered by the instrument was adopted from existing questionnaires. Consensus was reached on relevant content by a RAND modified Delphi scoring procedure by six rheumatology nurses and six rheumatologists, and a subsequent consensus meeting among six rheumatology nurses and four rheumatologists. Six rheumatology nurses and five rheumatologists provided written feedback on a preliminary pool of items written to assess the identified content domains. Subsequently, a focus group among nine patients was organised to identify additional content areas that might have been omitted from the item pool. Readability, feasibility and comprehensiveness of the resulting pool of 63 items were rated by eight patients from the focus group.ResultsCross-sectional data of 340 patients recruited from Bernhoven rheumatology department were used to evaluate psychometric properties. Preliminary analysis suggests that 21 (27%) items should be discarded based on an item total point biserial correlation <0.30. Confirmatory factor analysis with weighted least squares estimation on the polychoric correlation matrix suggested acceptable fit for a unidimensional measurement model for the remaining 45 items (CFI =0.95, TLI=0.95, RMSEA=0.02, WRMR=0.95). Internal consistency was also high for 45 items, with Cronbach's α=0.92.ConclusionsThese preliminary results suggest that the questionnaire is a valid and reliable measure for assessing factual disease related knowledge in RA patients. Further validation efforts based on modern item response theory based approaches are ongoing as well as work directed at developing a calibrated item bank, tailored short-forms and a computerized adaptive testing algorithm.ReferencesJoseph-Williams N, Elwyn G, Edwards A. Knowledge is not power for patients: a systematic review and thematic synthesis of patient-reported barriers and facilitators to shared decisio...