An investigation of clinical and laboratory variables which might form the basis for judging disease activity in clinical practice was made by six rheumatologists in a prospec-

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In the majority of patients with stable low DAS28 and stable treatment, infliximab can be down-titrated or discontinued, which results in a considerable reduction in costs without influencing QoL.

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.

Supplying the rheumatologist a report with information about medication use and adherence did not change adherence or patients' beliefs about medication. Further research is necessary to ensure effective support for adherence for individual patients with RA.

ObjectivesSelf-monitoring the disease course is a relatively new concept in the management of patients with inflammatory rheumatic diseases (IRDs). The aims of this pilot study were to obtain patients’ experiences with online self-monitoring, to assess information about the agreement between the disease course assessed with patient-reported outcome measures (PROMs) and an objectively measured Disease Activity Score 28 (DAS28) by the rheumatologist, and to assess adherence to predetermined PROM frequency intervals.DesignObservational study using qualitative and quantitative methods.SettingThe rheumatology outpatient clinic of a teaching hospital in The Netherlands (secondary care).Participants47 patients with an IRD who regularly attended the outpatient clinic.MethodsPatients completed PROMs by using an online self-monitoring program. Their experiences regarding self-monitoring were qualitatively assessed through a focus group discussion and telephone interviews using a thematic analysis approach. Adherence to the predefined PROM frequency (completed PROM assessments within the predetermined frequency) and the agreement between the DAS28 course and PROM values (Rheumatoid Arthritis Disease Activity Index-5 and the Rheumatoid Arthritis Impact of Disease (RAID)) were quantitatively assessed using descriptives.ResultsForty-seven patients participated, most of them diagnosed with rheumatoid arthritis (n=38, 80.9%). Three themes were identified: knowledge about and insight into the disease (activity), patient–professional interaction and functionality of the program. Mean adherence to the predetermined PROM frequency was 68.1%. The RAID showed the best agreement with the DAS28 course. Mean participation time was 350 days.ConclusionPatients were predominantly positive about online self-monitoring. They indicated that they gained more knowledge about their disease, felt less dependent on the healthcare professional and valued the insight into their long-term disease course. Barriers were mostly related to technical factors. Patients were able to and willing to self-monitor their disease, which could contribute to a more efficient allocation of outpatient consultations in the future.

Patients with rheumatoid arthritis (RA) are at higher risk of developing cardiovascular diseases (CVD). Interleukin (IL)-32 has previously been shown to be involved in the pathogenesis of RA and might be linked to the development of atherosclerosis. However, the exact mechanism linking IL-32 to CVD still needs to be elucidated. The influence of a functional genetic variant of IL-32 on lipid profiles and CVD risk was therefore studied in whole blood from individuals from the NBS cohort and RA patients from 2 independent cohorts. Lipid profiles were matched to the specific IL-32 genotypes. Allelic distribution was similar in all three groups. Interestingly, significantly higher levels of high density lipoprotein cholesterol (HDLc) were observed in individuals from the NBS cohort and RA patients from the Nijmegen cohort homozygous for the C allele (p = 0.0141 and p = 0.0314 respectively). In contrast, the CC-genotype was associated with elevated low density lipoprotein cholesterol (LDLc) and total cholesterol (TC) in individuals at higher risk for CVD (plaque positive) (p = 0.0396; p = 0.0363 respectively). Our study shows a functional effect of a promoter single-nucleotide polymorphism (SNP) in IL32 on lipid profiles in RA patients and individuals, suggesting a possible protective role of this SNP against CVD.

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