Aims To discuss and refine the preliminary definition of “independence” from the patient’s perspective in RA remission. Methods Data from a scoping review and international focus groups were presented at the OMERACT Remission in RA Patient Perspective Special Interest Group (SIG) meeting in February 2024. The SIG included 40 delegates from diverse geographic regions who discussed the findings and potential refinements of the preliminary definition of independence from the patient’s perspective in the context of RA remission. Results Drawing together findings from the scoping review and focus groups, the following preliminary definition of “independence” was presented for discussion: "Being able to do what you want, when you want, in the way you want to do it." Delegates emphasized the importance of capturing all aspects of independence, adjustments to the proposed preliminary definition were suggested, and some delegates requested more specificity before taking the preliminary definition forward for use in the next research stage. Issues were raised on whether cultural variation on concepts of independence was adequately captured in the qualitative work so far. For example, some cultures may value receiving support from others as a reaffirmation of social belonging and interdependence, rather than a contradiction of independence. This will need addressing in our future work to ensure cross-cultural differences in definitions of independence are not missed. The majority of delegates voted in favour of continuing the work toward defining targeted sub-domains, which will allow the group to develop an instrument to assess independence in RA remission from the patient’s perspective. Conclusion Consensus was reached in favour of continuing the work towards defining targeted sub-domains, which will allow the group to develop an instrument to assess independence in RA remission from the patient’s perspective. However, suggestions were made to refine and improve the current definition. The next steps include refining the definition, followed by identifying and/or developing instruments to create an outcome measure for independence in RA remission.

Objective: The objective of this review is to identify immunological pathways and markers of severity of illness associated with clinical outcomes that may represent potential therapeutic targets in the management of secondary hemophagocytic lymphohistiocytosis. Introduction: A broad range of immunomodulatory therapies is used to manage hemophagocytic lymphohistiocytosis, however, the supporting evidence for these therapies is scarce. Identifying patients likely to experience more severe disease or die is currently extremely difficult, if not impossible. The identification of implicated cytokines in secondary disease can provide further support for the identification of high-risk patients and the development of targeted therapies. Inclusion criteria: Studies reporting immune biomarker and cytokine measurement in adult patients (age ≥18 years) with secondary hemophagocytic lymphohistiocytosis will be considered for inclusion. Methods: The proposed review will be conducted in line with the JBI methodology for scoping reviews. MEDLINE (Ovid) and Embase (Ovid) will be searched, without date limitations. Data will be extracted using a data extraction tool developed by the reviewers. Relevant sources will be retrieved, and their citation details imported into the JBI System for the Unified Management, Assessment and Review of Information. Review registration: Open Science Framework https://osf.io/9524e

OBJECTIVE:Autoimmune rheumatic diseases commonly affect individuals of childbearing age, with historically increased adverse pregnancy outcomes in this group. The advent of disease-modifying antirheumatic drugs (DMARDs) has fostered more suitable conditions for pregnancy; however, this is accompanied by challenges in ensuring safe use in reproductive health. The aim of this review is to compare existing guideline recommendations for the use of DMARDs in pregnancy and reproductive health for patients with rheumatic disease. METHODS:A scoping review was performed with Medline and Embase, in addition to a hand search, to identify guidelines published since 2014 by academic societies in rheumatology that addressed the management of DMARDs in pregnancy in any of rheumatoid arthritis, ankylosing spondylitis, psoriatic arthritis, and systemic lupus erythematosus. Conventional synthetic DMARDs (csDMARDs) (methotrexate, sulfasalazine, leflunomide, and hydroxychloroquine), biologic DMARDs (bDMARDs) (adalimumab, etanercept, infliximab, golimumab, certolizumab, abatacept, tocilizumab, rituximab, and anakinra), and targeted synthetic DMARDs (tsDMARDs) (tofacitinib, baricitinib, and upadacitinib) were targeted. Two authors performed data extraction in duplicate (AC, AT). RESULTS:A total of 18 guidelines were included. Recommendations for DMARD use in preconception were present in 10 guidelines (56%), lactation in 12 guidelines (67%), and male fertility in 6 guidelines (33%). A total of 13 guidelines (72%) included recommendations for csDMARDs, 13 guidelines (72%) included recommendations for bDMARDs, and 5 guidelines (28%) included recommendations for tsDMARDs. There was moderate evidence supporting relatively uniform csDMARD recommendations, compared to minimal evidence for bDMARD and tsDMARD use with variable recommendations. CONCLUSION:There is heterogeneity in the formulation of guidelines on the use of DMARDs in pregnancy. Recommendations for csDMARDs were similar between guidelines. There was significant variability in recommendations for bDMARD and tsDMARD use, reflecting current minimal literature in this area.

Patients with autoimmune rheumatic diseases have high rates of surgical procedures including joint replacements despite the use of disease-modifying anti-rheumatic drugs (DMARDs). This scoping review compares clinical practice guideline recommendations for the perioperative management of DMARDs in such patients. Medline and EMBASE were searched, and a hand search of references was performed to obtain guidelines published since 2014 by national/international academic societies in rheumatology addressing perioperative management of DMARDs in any of adult rheumatoid arthritis (RA), ankylosing spondylitis (AS), psoriatic arthritis (PsA), juvenile idiopathic arthritis (JIA) or systemic lupus erythematosus (SLE). Data extraction was performed in duplicate by two authors. Twelve guidelines were included − 10 (83

AIMS:The Outcome Measures in Rheumatology Trials (OMERACT) Remission in Rheumatoid Arthritis (RA) patient perspective working group has previously found that patients prioritised independence, pain, and fatigue as key domains of remission in RA. However, there is currently no clear definition of independence. Consequently, this scoping review aimed to explore how independence is represented in the RA literature.METHODS:A comprehensive search of the EMBASE, Medline, and PsycInfo databases was performed for publications that used independence or autonomy as a disease activity measure, description of disease in remission or treatment outcome. Papers were included if they involved adult participants and were written in English, with no restrictions on study design or publication year. Two reviewers (TK and AC, AT or BJ) independently screened the abstracts. A thematic approach was applied to derive common definitions and descriptions of independence.RESULTS:660 articles were identified, of which 58 (25 qualitative, 28 quantitative, one mixed, and four reviews) met the inclusion criteria. 86% of total participants were female. Ten publications referenced remission. Independence took many forms; in addition to physical and functional capability, it was described in relation to work, social activities, autonomy in healthcare, and household activities. Four common themes describing independence were identified: 1. A return to a state before arthritis. 2. Being physically and functionally able. 3. A sense of freedom without needing to rely on others. 4. Having control over the organisation of one's life.CONCLUSION:Although independence is frequently mentioned in the RA literature, it has various meanings, lacks a consistent definition, and is a concept rarely applied to remission. It is multi-factorial, exceeding functional ability alone, and contextualised within sociodemographic and disease factors. This scoping review provides common descriptions of independence to inform future qualitative work towards the development of an outcome measure of independence for the assessment of RA in remission.