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Women and men differ in terms of the development and manifestation of inflammatory rheumatic diseases and outcomes as well as with respect to disease perception, health behavior and response to antirheumatic treatment. Sex-specific aspects are increasingly being researched in nearly all medical disciplines to optimize treatment strategies with the aim to improve individual treatment success. This article describes sex differences that can even now be taken into account in rheumatological care., (© 2024. The Author(s), under exclusive licence to Springer Medizin Verlag GmbH, ein Teil von Springer Nature.)

Advanced care planning (ACP) is a series of ongoing voluntary discussions between patients, families and healthcare professionals to plan for their future healthcare needs. Despite patients with rheumatic diseases having high symptom burden and disease complications, the ACP completion rates in patients with rheumatic diseases remain low. In this quality improvement project, we aimed to increase the number of completed ACP in a tertiary referral rheumatology centre in Singapore from 0 to 1 per month. We showed a statistically significant increase in ACP completion across 1 year with two Plan-Do-Study-Act cycles. Further studies are needed to explore further interventions for ACP completion in patients with rheumatic diseases., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

In the National database (NDB) of the German regional collaborative arthritis centres, annual data on the rheumatological care of patients with inflammatory rheumatic diseases have been collected since 1993. This first annual report presents current cross-sectional data on medication and patient-reported outcomes gathered in 2022., (© 2024. The Author(s).)

At the beginning of the coronavirus disease 2019 (COVID-19) pandemic in December 2019 there was no available evidence regarding the management of immunosuppressive or immunomodulatory treatment and the potential outcomes of severe acute respiratory syndrome coronavirus type 2 (SARS-CoV-2) infections in inflammatory rheumatic diseases (IRD). As a result, the Justus Liebig University of Giessen, Germany, in collaboration with the German Society for Rheumatology, established the German COVID-19 register ( www.covid19-rheuma.de ). The COVID-19 register enabled for the first time a systematic documentation and evaluation of viral infections in patients with IRD. The data collection started as early as March 2020. Currently, the register is one of the largest global registers in the field of COVID-19 and IRD. As of 18 December 2023 the register has recorded more than 7100 cases. The first scientific findings on SARS-CoV‑2 infections in IRD patients were generated from the register in 2020, showing an association between disease activity of IRD, certain comorbidities, such as cardiovascular diseases and treatment with rituximab, with an unfavorable course. The contents and construction of the database of the register were designed at the conception to allow collaboration and data exchange with other national and international registers (e.g., EULAR COVID-19 register, COVID-19 global rheumatology alliance and the Lean European open survey on SARS-CoV‑2 infected patients). In addition, other registers and surveys were initiated. A vaccination register documents the tolerability and possible adverse reactions to COVID-19 vaccination in IRD patients. The data resulted in numerous publications and formed the basis for national and international recommendations for action in the care and vaccination of IRD patients during the COVID-19 pandemic. In summary, the German COVID-19 register has made a significant contribution to the understanding of the course of COVID-19 in IRD patients and has facilitated international collaboration for a better understanding of COVID-19 and IRD., (© 2024. The Author(s), under exclusive licence to Springer Medizin Verlag GmbH, ein Teil von Springer Nature.)

Objective: The aim of this study was to describe the adult rheumatology workforce in the United States, assess change in rheumatology providers over time, and identify variation in rheumatology practice characteristics., Methods: Using national Medicare claims data from 2006 to 2020, clinically active rheumatology physicians and advanced practice providers (APPs) were identified. Each calendar year was used for inclusion, exclusion, and analysis, and providers were determined to be entering, exiting, or stable based upon presence or absence in the prior or subsequent years of data. Characteristics (age, gender, practice type, rural, and region) of rheumatologists were determined for 2019 and in mutually exclusive study periods from 2009 to 2011, 2012 to 2015, and 2016 to 2019. The location of rheumatology practice was determined by billing tax identification and mapped. Demographics of physicians exiting or entering the rheumatology workforce were compared separately to those stable by logistic regression., Results: The clinically active adult rheumatology workforce identified in US Medicare in 2019 was 5,667 rheumatologists and 379 APPs. From 2009 to 2020, the number of rheumatologists increased 23% and the number of APPs increased 141%. There was an increase in female rheumatologists over time, rising to 43% in 2019. Women and those employed by a health care system were more likely to exit, and those in a small practice or in the South were less likely to exit., Conclusion: The overall number of clinically active rheumatology providers grew more than 20% over the last decade to a high of 6,036 in 2020, although this rate of growth appears to be flattening off in later years., (© 2024 The Authors. Arthritis & Rheumatology published by Wiley Periodicals LLC on behalf of American College of Rheumatology.)

Background We present the experience of telerheumatology consultation services carried out in an eastern state of India. Methods We did this prospective, observational study of patients with rheumatological disorders and followed through telemedicine between December 2015 and May 2019. Results During the study period, we provided teleconsultation to 3583 patients with the help of 11 201 telemedicine visits. Patients resided at a median distance of 248 (13 to 510) km from the telemedicine hub. The cumulative savings of the patients as a result of this service were ₹2.4 crore (24 million). The median travel time saved was 7 hours (30 minutes to 12 hours) per patient per visit and a median of ₹6700 was saved per visit per patient. Conclusion Sustained efforts over a long period can lead to the delivery of essential rheumatology services via telemedicine to an under-priviledged population, reduce the financial burden of the poor, and help women to access healthcare services in remote parts of low- and middle-income countries (LMICs).

Objectives: Recombinant zoster vaccine (RZV) is Food and Drug Administration approved for the prevention of herpes zoster (shingles) in adults 50 years old and older. Immunocompromised subjects were excluded from the pivotal vaccine trials. We studied the safety of this vaccine in our university-affiliated rheumatology practice., Methods: This was a single-center, retrospective study focusing on subjects who received RZV during 2018. We collected the demographic data, any self-reported adverse events after vaccination, C-reactive protein, Routine Assessment of Patient Index Data 3 (RAPID3) scores for subjects with rheumatoid arthritis, and available RAPID3 scores for all study subjects before and after the vaccination., Results: Comparision of C-reactive protein (n = 40), RAPID3 scores for subjects with rheumatoid arthritis (n = 16), and available RAPID3 scores for all subjects (n = 21) using the paired t test, did not show significant differences before and after the administration of RZV. A total of 6.4% of patients reported adverse events after vaccination. The adverse events were mild and did not lead to hospitalization, end organ damage, or change in treatment plan., Conclusions: The RZV was safe and well tolerated among our study population.

Objective: Using the American College of Rheumatology Rheumatology Informatics System for Effectiveness (RISE) registry, our objective was to examine performance on rheumatoid arthritis (RA) quality measures and to assess the association between practice characteristics and changes in performance over time among participating practices., Methods: We analyzed data from practices enrolled in RISE between January 1, 2015 and December 31, 2017. Eight quality measures in the areas of RA disease management, cardiovascular risk reduction, and patient safety were examined. Variability in performance was evaluated at the practice level. Multivariate linear models were used to predict change in measure performance by year and to determine the effect of practice characteristics on change in performance over time., Results: Data from 59,986 patients from 54 practices were examined. The mean ± SD age was 62 ± 14 years, 77% were female, 69% were Caucasian, and most patients were seen in a single-specialty group practice (46%). The average performance on measures related to RA treatments was consistently high (>90%) across the study period. Measures related to RA functional status and disease activity assessment had the greatest improvements over time (8.4% and 13.0% increase per year, respectively; P < 0.001). Single-specialty group practices had the fastest rates of improvement over time across all measures., Conclusion: Among practices participating in RISE between 2015 and 2017, performance on most RA quality measures improved. Single-specialty group practices saw the fastest rates of improvement over time. Identification of workflow patterns leading to dramatic improvements in quality of care will help guide process redesign to address gaps in priority areas, such as tuberculosis screening and blood pressure control., (© 2020 American College of Rheumatology.)

Objective: Although multiple national quality measures focus on the management and safety of rheumatoid arthritis, few measures address the care of patients with systemic lupus erythematosus (SLE). Our objective was to apply a group of quality measures relevant to the care of patients with SLE, and we used the American College of Rheumatology's Rheumatology Informatics System for Effectiveness (RISE) registry to assess nationwide variations in care., Methods: The data derived from RISE and included patients who had ≥2 visits with SLE codes ≥30 days apart in 2017-2018. We calculated performance on 5 quality measures: renal disease screening, blood pressure assessment and management, hydroxychloroquine (HCQ) prescribing, safe dosing for HCQ, and prolonged glucocorticoid use at doses of >7.5 mg/day. We reported performance on these measures at the practice level. We used logistic regression to assess independent predictors of performance after adjusting for sociodemographic and utilization factors., Results: We included 27,567 unique patients from 186 practices; 91.7% were female and 48% White, with a mean age of 53.5 ± 15.2 years. Few patients had adequate screening for the development of renal manifestations (39.5%). Although blood pressure assessment was common (94.4%), a meaningful fraction of patients had untreated hypertension (17.7%). Many received HCQ (71.5%), but only 62% at doses of ≤5.0 mg/kg/day. Some received at least moderate-dose steroids for ≥90 days (18.5%). We observed significant practice variation on every measure., Conclusion: We found potential gaps in care for patients with SLE across the US. Although some performance variation may be explained by differences in disease severity, dramatic differences suggest that developing quality measures to address important health care processes in SLE may improve care., (© 2020 American College of Rheumatology.)

Objective: The transfer from pediatric to adult care for young adults is a vulnerable period. Our objectives were to quantify the time between the final pediatric and the first adult visit and to evaluate unscheduled utilization in care and progression to end-stage renal disease (ESRD) or death., Methods: We conducted a retrospective analysis of pediatric patients transferring to a large adult rheumatology clinic. Outcomes included time to first completed adult visit, unscheduled health care utilization (hospitalizations and emergency department [ED] visits), and progression to ESRD or death. Multivariable regression models assessed variables predictive of outcomes of interest., Results: A total of 141 pediatric patients who transferred care were identified: 77% female, 65% Hispanic, and 60% with connective tissue diseases (CTDs). The mean time between final pediatric and first completed adult rheumatology visit was 221 days (range 0-1,207 days). In regression modeling, we found that continued insurance coverage, younger age at referral, and referral from a pediatric rheumatologist were predictive of shorter time to completed adult visit (P < 0.005). Factors associated with hospitalizations and ED visits included CTD diagnosis and Black race (odds ratio [OR] 8.54 [95% confidence interval (95% CI) 1.84-39.58] and 3.04 [95% CI 1.02-9.12] for hospitalizations and OR 3.6 [95% CI 1.59-8.14] and 6.0 [95% CI 1.60-22.69] for ED visits, respectively). ESRD or death occurred among 15% of patients with a CTD., Conclusion: In pediatric patients transferring to an adult rheumatology clinic, continued insurance coverage and referral from a pediatric rheumatologist decreased delays in attending an adult visit; CTD and Black race were associated with high rates of unscheduled health care utilization., (© 2020, American College of Rheumatology.)

The Coronavirus disease 2019 (COVID-19) outbreak turned out the greatest pandemic for decades. It challenged enormously the global health system, forcing it to adjust to the new realities. We aimed to analyze articles covering COVID-19 papers in the rheumatological field and outline emerging topics raising within this frame. We applied the bibliometric database Scopus for our literature search and conducted it on the 5th of June using the following keywords: "rheumatic" OR "rheumatology" OR "rheumatoid arthritis" OR "systemic lupus erythematosus" OR "myositis" OR "systemic sclerosis" OR "vasculitis" OR "arthritis" OR "ankylosing spondylitis" AND "COVID-19". We analyzed all selected articles according to various aspects: type of document, authorship, journal, citations score, rheumatology field, country of origin, language, and keywords. With the help of the software tool VOSviewer version 1.6.15, we have built the visualizing network of authors and keywords co-occurrence. The measurement of the social impact of articles was made using Altmetric data. This study included 1430 retrieved articles with open access mostly. The top five journals in this field were Annals of the Rheumatic Diseases (n = 65), Rheumatology International (n = 51), Clinical Rheumatology (n = 50), Lancet Rheumatology (n = 50), and Frontiers In Immunology (n = 33). Most studies originate from countries with a high incidence of COVID-19 among the general population (the USA-387; Italy-268; UK-184; France-114; Germany-110; India-98 and Spain-96, China-94, Canada-73 Turkey-66). Original Articles (42.1%) were the most common articles' type, following by Letters (24.4%), Reviews (21.7%), Notes (6%), Editorials (4.8%), Erratum (1%). According to the citations scores, articles dedicated to the clinical course of COVID-19 in patients with rheumatic diseases were of the highest importance for the scientific rheumatologic community. Rheumatoid arthritis (n = 527), systemic lupus erythematosus (n = 393), vasculitis (n = 267), myositis (n = 71), systemic sclerosis (n = 68), and psoriatic arthritis (n = 68) were the most widely discussed rheumatic diseases in the view of COVID-19. The analysis of Altmetric and citations scores revealed a moderate correlation between them. This article provides a comprehensive bibliometric and altmetric analysis of COVID-19 related articles in the rheumatology field and summarizes data about features of rheumatology service in the time of the pandemic., (© 2021. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.)

Objective: The representation of women among authors of peer reviewed scientific papers is gradually increasing. The aims of this study were to examine the trend of the proportion of women among authors in the field of rheumatology during the last two decades., Methods: Articles published in journals ranked in the top quartile of the field of rheumatology in the years 2002-2019 were analysed. The authorship positions of all authors, country of the article's source and manuscript type were retrieved by specifically designed software., Results: Overall, 153 856 author names were included in the final analysis. Of them, 55 608 (36.1%) were women. There was a significant rise in the percentage of women authors over time (r = 0.979, P <0.001) from 30.9% in 2002 to 41.2% in 2018, with a slight decline to 39.8% in 2019. There were significantly fewer women in the senior author positions compared with the first author positions (24.3% in senior position vs 40.9% as first author, P <0.001)., Conclusion: The proportion of women among authors of rheumatology articles has increased over the years, both in general and as a first or senior author; however, their proportion is still <50% and there is still a gap between the proportion of women among first authors and the proportion of women among senior authors., (© The Author(s) 2021. Published by Oxford University Press on behalf of the British Society for Rheumatology. All rights reserved. For permissions, please email: journals.permissions@oup.com.)

Objectives: Multisystem inflammatory syndrome in children (MIS-C) is a rare but severe condition resulting in excessive response of the immune system after SARS-CoV-2 infection. We report a single-center cohort of children with MIS-C, describing the spectrum of presentation, therapies, clinical course, and short-term outcomes., Methods: This is a prospective observational study from to a tertiary pediatric rheumatology center including patients (aged 1 month to 21 years) diagnosed with MIS-C between April 2020-April 2021. Demographic, clinical, laboratory results and follow-up data were collected through the electronic patient record system and analyzed., Results: A total of 67 patients with MIS-C were included in the study. Fever was detected in all patients; gastrointestinal system symptoms were found in 67.2% of the patients, rash in 38.8%, conjunctivitis in 31.3%, hypotension in 26.9% myocarditis, and/or pericarditis in 22.4%, respectively. Respiratory symptoms were only in five patients (7.5%). Kawasaki Disease like presentation was found 37.3% of the patients. The mean duration of hospitalization was 11.8 7.07 days. Fifty-seven patients (85%) received intravenous immunoglobulin (IVIG), 45 (67%) received corticosteroids, 17 (25.3%) received anakinra, and one (1.5%) received tocilizumab. Seven of the patients (10.4%) underwent therapeutic plasma exchange (TPE). In 21 (31.3%) patients, a pediatric intensive care unit (PICU) was required in a median of 2 days. The first finding to improve was fever, while the first parameter to decrease was ferritin (median 6.5 days (IQR, 4-11.2 days)). Sixty-five patients were discharged home with a median duration of hospital stay of 10 days (IQR, 7-15 days)., Conclusion: Patients with MIS-C may have severe cardiac findings and intensive care requirements in admission and hospital follow-up. The vast majority of these findings improve with effective treatment without any sequelae until discharge and in a short time in follow-up. Although the pathogenesis and treatment plan of the disease are partially elucidated, follow-up studies are needed in terms of long-term prognosis and relapse probabilities.

Objectives: To determine quantitative SI joint MRI lesion cut-offs that optimally define a positive MRI for inflammatory and structural lesions typical of axial SpA (axSpA) and that predict clinical diagnosis., Methods: The Assessment of SpondyloArthritis international Society (ASAS) MRI group assessed MRIs from the ASAS Classification Cohort in two reading exercises where (A) 169 cases and 7 central readers; (B) 107 cases and 8 central readers. We calculated sensitivity/specificity for the number of SI joint quadrants or slices with bone marrow oedema (BME), erosion, fat lesion, where a majority of central readers had high confidence there was a definite active or structural lesion. Cut-offs with ≥95% specificity were analysed for their predictive utility for follow-up rheumatologist diagnosis of axSpA by calculating positive/negative predictive values (PPVs/NPVs) and selecting cut-offs with PPV ≥ 95%., Results: Active or structural lesions typical of axSpA on MRI had PPVs ≥ 95% for clinical diagnosis of axSpA. Cut-offs that best reflected a definite active lesion typical of axSpA were either ≥4 SI joint quadrants with BME at any location or at the same location in ≥3 consecutive slices. For definite structural lesion, the optimal cut-offs were any one of ≥3 SI joint quadrants with erosion or ≥5 with fat lesions, erosion at the same location for ≥2 consecutive slices, fat lesions at the same location for ≥3 consecutive slices, or presence of a deep (i.e. >1 cm depth) fat lesion., Conclusion: We propose cut-offs for definite active and structural lesions typical of axSpA that have high PPVs for a long-term clinical diagnosis of axSpA for application in disease classification and clinical research., (© The Author(s) 2021. Published by Oxford University Press on behalf of the British Society for Rheumatology. All rights reserved. For permissions, please email: journals.permissions@oup.com.)

The SARS-CoV-2 global pandemic resulted in major disruptions to medical care. We aimed to understand changes in outpatient care delivery and use of telemedicine in U.S. rheumatology practices during this period. Rheumatology Informatics System Effectiveness (RISE) is a national, EHR-enabled registry that passively collects data on all patients seen by participating practices. Included practices were required to have been participating in RISE from January 2019 through August 2020 (N = 213). We compared total visit counts and telemedicine visits during March-August 2020 to March-August 2019 and stratified by locations in states with shelter-in-place (SIP) orders. We assessed characteristics of patients within each practice, including primary rheumatic diagnosis and disease activity scores, where available. We included 213 practices with 945,160 patients. Overall, we found visit counts decreased by 10.9% (from 1,302,455 to 1,161,051) between March and August 2020 compared to 2019; this drop was most dramatic during the month of April (- 22.3%). Telemedicine visits increased from 0% to a mean of 12.1%. Practices in SIP states had more dramatic decreases in visits, (11.5% vs. 5.3%). We found no major differences in primary diagnoses or disease activity across the two periods. We detected a meaningful decrease in rheumatology visits in March-August 2020 during the SARS-CoV-2 global pandemic compared to the year prior with a concomitant increase in the use of telemedicine. Future work should address possible adverse consequences to patient outcomes due to decreased contact with clinicians., (© 2021. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.)

Objectives: To determine factors associated with COVID-19-related death in people with rheumatic diseases., Methods: Physician-reported registry of adults with rheumatic disease and confirmed or presumptive COVID-19 (from 24 March to 1 July 2020). The primary outcome was COVID-19-related death. Age, sex, smoking status, comorbidities, rheumatic disease diagnosis, disease activity and medications were included as covariates in multivariable logistic regression models. Analyses were further stratified according to rheumatic disease category., Results: Of 3729 patients (mean age 57 years, 68% female), 390 (10.5%) died. Independent factors associated with COVID-19-related death were age (66-75 years: OR 3.00, 95% CI 2.13 to 4.22; >75 years: 6.18, 4.47 to 8.53; both vs ≤65 years), male sex (1.46, 1.11 to 1.91), hypertension combined with cardiovascular disease (1.89, 1.31 to 2.73), chronic lung disease (1.68, 1.26 to 2.25) and prednisolone-equivalent dosage >10 mg/day (1.69, 1.18 to 2.41; vs no glucocorticoid intake). Moderate/high disease activity (vs remission/low disease activity) was associated with higher odds of death (1.87, 1.27 to 2.77). Rituximab (4.04, 2.32 to 7.03), sulfasalazine (3.60, 1.66 to 7.78), immunosuppressants (azathioprine, cyclophosphamide, ciclosporin, mycophenolate or tacrolimus: 2.22, 1.43 to 3.46) and not receiving any disease-modifying anti-rheumatic drug (DMARD) (2.11, 1.48 to 3.01) were associated with higher odds of death, compared with methotrexate monotherapy. Other synthetic/biological DMARDs were not associated with COVID-19-related death., Conclusion: Among people with rheumatic disease, COVID-19-related death was associated with known general factors (older age, male sex and specific comorbidities) and disease-specific factors (disease activity and specific medications). The association with moderate/high disease activity highlights the importance of adequate disease control with DMARDs, preferably without increasing glucocorticoid dosages. Caution may be required with rituximab, sulfasalazine and some immunosuppressants., Competing Interests: Competing interests: AS reports personal fees from lectures for AbbVie, MSD, Roche, BMS and Pfizer, all outside the submitted work. MG reports grants from National Institutes of Health, NIAMS, outside the submitted work. JL reports a research grant from Pfizer, outside of the submitted work. EFM reports that LPCDR received support for specific activities: grants from Abbvie, Novartis, Janssen-Cilag, Lilly Portugal, Sanofi, Grünenthal S.A., MSD, Celgene, Medac, Pharmakern and GAfPA; grants and non-financial support from Pfizer; non-financial support from Grünenthal GmbH, outside the submitted work. CR has received consulting/speaker’s fees from Abbvie, Amgen, AstraZeneca, BMS, Biogen, Eli Lilly, Glenmark, GSK, MSD, Mylan and Pfizer, and grants from Biogen, Lilly and Nordic Pharma, all unrelated to this manuscript. MJS is supported by unrestricted grants from AbbVie, Biogen, Gilead, Lilly, MSD, Novartis and Pfizer. Her work is supported by grants from the National Institutes of Health and Agency for Healthcare Research and Quality. She leads the Data Analytic Center for the American College of Rheumatology, which is unrelated to this work. ES reports non-financial support from Canadian Arthritis Patient Alliance, outside the submitted work. JS is supported by the National Institute of Arthritis and Musculoskeletal and Skin Diseases (grant numbers K23 AR069688, R03 AR075886, L30 AR066953, P30 AR070253 and P30 AR072577), the Rheumatology Research Foundation (R Bridge Award), the Brigham Research Institute, and the R. Bruce and Joan M. Mickey Research Scholar Fund. He has received research support from Amgen and Bristol-Myers Squibb and performed consultancy for Bristol-Myers Squibb, Gilead, Inova Diagnostics, Janssen, Optum and Pfizer unrelated to this work. PS reports personal fees from American College of Rheumatology/Wiley Publishing, outside the submitted work. TT reports personal fees for lectures and expertises from Amgen, Arrow, Biogen, BMS, Chugai, Expanscience, Gilead, Grunenthal, LCA, Lilly, Medac, MSD, Nordic, Novartis, Pfizer, Sandoz, Sanofi, Theramex, Thuasne, TEVA and UCB, and reports financial support or fees for research activities from Amgen, Bone Therapeutics, Chugai, MSD, Novartis, Pfizer and UCB, all unrelated to this manuscript. ZSW reports grant support from Bristol-Myers Squibb and consulting fees from Viela Bio. JB-C has received consulting/speaker’s fees from Abbvie, MSD, BMS and Roche, and grants from Pfizer, all unrelated to this manuscript. He reports non-branded marketing campaigns for Novartis. PC has received consulting and lecturing fees from Abbvie, AstraZeneca, Bristol-Myers Squibb, Gilead, Glaxo Smith Kline, Innotech, Janssen, Merck Sharp Dohme, Roche, Servier and Vifor. LC has not received fees or personal grants from any laboratory, but her institute works by contract for laboratories among other institutions, such as Abbvie Spain, Eisai, Gebro Pharma, Merck Sharp & Dohme España, S.A., Novartis Farmaceutica, Pfizer, Roche Farma, Sanofi Aventis, Astellas Pharma, Actelion Pharmaceuticals España, Grünenthal GmbH and UCB Pharma. LG reports personal consultant fees from AbbVie, Amgen, BMS, Biogen, Celgene, Gilead, Janssen, Lilly, Novartis, Pfizer, Samsung Bioepis, Sanofi-Aventis and UCB, and grants from Amgen, Lilly, Janssen, Pfizer, Sandoz, Sanofi and Galapagos, all unrelated to this manuscript. RG reports non-financial support from Pfizer Australia, personal fees from Pfizer Australia, personal fees from Cornerstones, personal fees from Janssen New Zealand, non-financial support from Janssen Australia, personal fees from Novartis, outside the submitted work. EH reports personal consultant fees from Actelion, Sanofi-Genzyme and GSK, and grants from GSK, all unrelated to this manuscript. RH reports research grant from Pfizer and personal fees from AbbVie, Pfizer, Novartis, Amgen, Mylan, Gilead, Medac and Takeda, all outside the submitted work. JH reports grants from Rheumatology Research Foundation, grants from Childhood Arthritis and Rheumatology Research Alliance (CARRA), personal fees from Novartis, outside the submitted work. KLH reports she has received non-personal speaker’s fees from Abbvie and grant income from BMS, UCB and Pfizer, all unrelated to this manuscript. KLH is supported by the NIHR Manchester Biomedical Research Centre. PCR reports personal fees from Abbvie, Eli Lilly, Gilead, Janssen, Novartis, Pfizer, Roche and UCB, non-financial support from BMS, research funding from Janssen, Novartis, Pfizer and UCB, all outside the submitted work. JY reports consulting fees from AstraZeneca and Eli Lilly, and grants from Pfizer, outside the submitted work. PMM has received consulting/speaker’s fees from Abbvie, BMS, Celgene, Eli Lilly, Janssen, MSD, Novartis, Orphazyme, Pfizer, Roche and UCB, all unrelated to this manuscript, and is supported by the National Institute for Health Research (NIHR), University College London Hospitals (UCLH) and Biomedical Research Centre (BRC)., (© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Herbal medicines made from the bark of the Cinchona tree, and later quinine, have been widely used for centuries to treat medical conditions such as tropical malaria. More recently, chloroquine (CQ) and its synthetic derivatives have been used as antimalarials and to treat systemic lupus erythematosus, rheumatoid arthritis, and in the past 14 months or so, COVID-19 pneumonia. Anecdotal evidence and the erratic covering through social media of its potential efficacy in the treatment of COVID-19 pneumonia have resulted in the widespread off-label use of CQ in South Africa and worldwide. This study aimed to show that access to CQ as a chronic medication for rheumatic and musculoskeletal diseases was limited during the COVID-19 pandemic, and that this resulted in an increased incidence of flares in these patients, affecting their morbidity and potentially leading to mortality.

Previous studies found that physicians working in developed countries in Europe and in the USA declared insufficient knowledge concerning immune-related adverse events (irAE) following use of immune checkpoint inhibitors (ICI) in cancer treatment. We determined this knowledge gap among rheumatologists and medical students (MS) in Brazil. A web-based structured survey or a direct interview was applied to 1428 board-certified Brazilian rheumatologists and an adapted questionnaire was sent to 840 undergraduate MS attending the last 2 years of Medical Schools in Fortaleza-CE, Brazil, in September 2019. 228 (15.9%) rheumatologists and 145 (17.2%) MS answered the survey; 136 (60%) rheumatologists worked at Institutions with Oncology service. Rheumatologists had 22.6 ± 12.6 years of medical practice, most [116 (50.9%)] worked in private practice and 9 (3.9%) were on training. Fifty-three (23.4%) declared being familiar [40 (17.6%)] or very familiar [13 (5.8%)] with irAE. Almost two-thirds declared having never managed irAE and about a third (38.6%) felt confident in managing such patients. Knowledge among rheumatologists was similar regardless of having more or less than 10 years of practice (P = 0.758). Less than 5% MS declared being familiar with ICI and most have never heard of irAE. There is a large gap concerning knowledge about ICI and irAE among rheumatologists and MS in Brazil. Continuing medical education strategies are needed to improve this knowledge.

Background: The worldwide burden of musculoskeletal diseases is increasing. The number of newly registered rheumatologists has stagnated. Primary care, which takes up a key role in early detection of rheumatic disease, is working at full capacity. COVID-19 and its containment impede rheumatological treatment. Telemedicine in rheumatology (telerheumatology) could support rheumatologists and general practitioners., Objective: The goal of this study was to investigate acceptance and preferences related to the use of telerheumatology care among German rheumatologists and general practitioners., Methods: A nationwide, cross-sectional, self-completed, paper-based survey on telerheumatology care was conducted among outpatient rheumatologists and general practitioners during the pre-COVID-19 period., Results: A total of 73.3% (349/476) of survey participants rated their knowledge of telemedicine as unsatisfactory, poor, or very poor. The majority of survey participants (358/480, 74.6%) answered that they do not currently use telemedicine, although 62.3% (291/467) would like to. Barriers to the implementation of telemedicine include the purchase of technology equipment (182/292, 62.3%), administration (181/292, 62.0%), and poor reimbursement (156/292, 53.4%). A total of 69.6% (117/168) of the surveyed physicians reckoned that telemedicine could be used in rheumatology. Surveyed physicians would prefer to use telemedicine to communicate directly with other physicians (370/455, 81.3%) than to communicate with patients (213/455, 46.8%). Among treatment phases, 64.4% (291/452) of participants would choose to use telemedicine during follow-up. Half of the participants would choose telecounseling as a specific approach to improve rheumatology care (91/170, 53.5%)., Conclusions: Before COVID-19 appeared, our results indicated generally low use but high acceptance of the implementation of telerheumatology among physicians. Participants indicated that the lack of a structural framework was a barrier to the effective implementation of telerheumatology. Training courses should be introduced to address the limited knowledge on the part of physicians in the use of telemedicine. More research into telerheumatology is required. This includes large-scale randomized controlled trials, economic analyses, and the exploration of user preferences., (©Felix Muehlensiepen, Johannes Knitza, Wenke Marquardt, Jennifer Engler, Axel Hueber, Martin Welcker. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 29.03.2021.)

Objectives: We aimed to estimate what proportion of people with SLE attending UK rheumatology clinics would be categorized as being at high risk from coronavirus disease 2019 (COVID-19) and therefore asked to shield, and explore what implications this has for rheumatology clinical practice., Methods: We used data from the British Society for Rheumatology multicentre audit of SLE, which included a large, representative cross-sectional sample of patients attending UK Rheumatology clinics with SLE. We calculated who would receive shielding advice using the British Society for Rheumatology's risk stratification guidance and accompanying scoring grid, and assessed whether ethnicity and history of nephritis were over-represented in the shielding group., Results: The audit included 1003 patients from 51 centres across all 4 nations of the UK. Overall 344 (34.3%) patients had a shielding score ≥3 and would have been advised to shield. People with previous or current LN were 2.6 (1.9-3.4) times more likely to be in the shielding group than people with no previous LN (P < 0.001). Ethnicity was not evenly distributed between the groups (chi-squared P < 0.001). Compared with White people, people of Black ethnicity were 1.9 (1.3-2.8) and Asian 1.9 (1.3-2.7) times more likely to be in the shielding group. Increased risk persisted after controlling for LN., Conclusion: Our study demonstrates the large number of people with SLE who are likely to be shielding. Implications for clinical practice include considering communication across language and cultural differences, and ways to conduct renal assessment including urinalysis, during telephone and video consultations for patients who are shielding., (© The Author(s) 2020. Published by Oxford University Press on behalf of the British Society for Rheumatology. All rights reserved. For permissions, please email: journals.permissions@oup.com.)

Objective: Racial/ethnic minorities experience more severe outcomes of coronavirus disease 2019 (COVID-19) in the general US population. This study was undertaken to examine the association between race/ethnicity and COVID-19 hospitalization, ventilation status, and mortality in people with rheumatic disease., Methods: US patients with rheumatic disease and COVID-19 were entered into the COVID-19 Global Rheumatology Alliance physician registry between March 24, 2020 and August 26, 2020 were included. Race/ethnicity was defined as White, African American, Latinx, Asian, or other/mixed race. Outcome measures included hospitalization, requirement for ventilatory support, and death. Multivariable regression models were used to estimate odds ratios (ORs) and 95% confidence intervals (95% CIs) adjusted for age, sex, smoking status, rheumatic disease diagnosis, comorbidities, medication use prior to infection, and rheumatic disease activity., Results: A total of 1,324 patients were included, of whom 36% were hospitalized and 6% died; 26% of hospitalized patients required mechanical ventilation. In multivariable models, African American patients (OR 2.74 [95% CI 1.90-3.95]), Latinx patients (OR 1.71 [95% CI 1.18-2.49]), and Asian patients (OR 2.69 [95% CI 1.16-6.24]) had higher odds of hospitalization compared to White patients. Latinx patients also had 3-fold increased odds of requiring ventilatory support (OR 3.25 [95% CI 1.75-6.05]). No differences in mortality based on race/ethnicity were found, though power to detect associations may have been limited., Conclusion: Similar to findings in the general US population, racial/ethnic minorities with rheumatic disease and COVID-19 had increased odds of hospitalization and ventilatory support. These results illustrate significant health disparities related to COVID-19 in people with rheumatic diseases. The rheumatology community should proactively address the needs of patients currently experiencing inequitable health outcomes during the pandemic., (© 2020, American College of Rheumatology.)

To evaluate the public interest in rheumatic diseases during the coronavirus disease 2019 (COVID-19) pandemic. Google Trends was queried to analyze search trends in the United States for numerous rheumatic diseases and also the interest in a rheumatologist. Three 8-week periods in 2020 ((March 15-May 9), (May 10-July 4), and (July 5-August 29)) were compared to similar periods of the prior 4 years (2016-2019). Compared to a similar time period between 2016 and 2019, a significant decrease was found in the relative search volume for more than half of the search terms during the initial March 15-May 9, 2020 period. However, this trend appeared to reverse during the July 5-August 29, 2020 period where the relative volume for nearly half of the search terms were not statistically significant compared to similar periods of the prior 4 years. In addition, this period showed a significant increase in relative volume for the terms: Axial spondyloarthritis, ankylosing spondylitis, psoriatic arthritis, rheumatoid arthritis, Sjögren's syndrome, antiphospholipid syndrome, scleroderma, Kawasaki disease, Anti-Neutrophil Cytoplasmic Antibody (ANCA)-associated vasculitis, and rheumatologist. There was a significant decrease in relative search volume for many rheumatic diseases between March 15 and May 9, 2020 when compared to similar periods during the prior 4 years. However, the trends reversed after the initial period ended. There was an increase in relative search for the term "rheumatologist" between July and August 2020 suggesting the need for rheumatologists during the COVID-19 pandemic. Policymakers and healthcare providers should address the informational demands on rheumatic diseases and needs for rheumatologists by the general public during pandemics like COVID-19.

Enormous progress has been made in the field of rheumatology in the past several decades, historically led by publicly funded academic innovators but in more recent times with much greater involvement of the pharmaceutical industry. This shift in resources has created a complex new model for reinvestment in the medical community in which the vast majority of private funds are redirected towards influencing the prescription behaviour of practitioners through 'key opinion leaders', with the main purpose of enhancing and perpetuating profit rather than innovation and critical thinking, and often at the expense of partnerships with scientists (that is, basic and translational researchers) and academic collaborations. This new episteme brings multiple opportunities to rethink approaches to sustaining long-term critical research in the field, ultimately maximizing the return on investment: scientific knowledge for the benefit of patients and society. Central to such strategies should be the rebalancing of academia-industry partnerships towards academic research and the involvement of 'innovation and knowledge leaders', rather than mostly key opinion leaders.

Background: Paediatric rheumatic diseases are a leading cause of acquired disability in Southeast Asia and Asia-Pacific Countries (SE ASIA/ASIAPAC). The aims of this study were to identify and describe the challenges to the delivery of patient care and identify solutions to raise awareness about paediatric rheumatic diseases., Methods: The anonymised online survey included 27 items about paediatric rheumatology (PR) clinical care and training programmes. The survey was piloted and then distributed via Survey-Monkey™ between March and July 2019. It was sent to existing group lists of physicians and allied health professionals (AHPs), who were involved in the care pathways and management of children with rheumatic diseases in SE ASIA/ASIAPAC., Results: Of 340 participants from 14 countries, 261 participants had been involved in PR care. The majority of the participants were general paediatricians. The main reported barriers to providing specialised multidisciplinary service were the absence or inadequacy of the provision of specialists and AHPs in addition to financial issues. Access to medicines was variable and financial constraints cited as the major obstacle to accessing biological drugs within clinical settings. The lack of a critical mass of specialist paediatric rheumatologists was the main perceived barrier to PR training., Conclusions: There are multiple challenges to PR services in SE ASIA/ASIAPAC countries. There is need for more specialist multidisciplinary services and greater access to medicines and biological therapies. The lack of specialist paediatric rheumatologists is the main barrier for greater access to PR training.

Objective: In academic medicine, journal article authorship is central to career advancement and promotion. This study aimed to examine the contemporary representation of women as first and senior authors of rheumatology original research articles., Methods: The gender of the first and senior author, disease category, research design, and funding source were extracted from rheumatology original research articles published in high-impact rheumatology and general medical journals between 2015 and 2019., Results: The analysis included 7,651 original research articles. In total, 51.5% of the articles had women first authors (95% confidence interval [95% CI] 50.4-52.6%) and 35.3% had women senior authors (95% CI 34.2-36.4%). Women were significantly less likely to be first and senior authors of articles reporting randomized controlled trials compared with other clinical research designs (P < 0.001), and of articles reporting industry-funded/industry-initiated studies compared with studies not funded by industry (P ≤ 0.01). Of the articles reporting industry-funded/industry-initiated randomized controlled trials, women were first authors in 18.5% (95% CI 13.8-24.0%) and senior authors in 23.9% (95% CI 18.6-29.8%)., Conclusion: In rheumatology research articles, there is gender parity for first authorship, but women are underrepresented in senior authorship positions. Underrepresentation of women in authorship is particularly apparent in articles reporting randomized controlled trials, and especially those that are initiated by industry., (© 2020, American College of Rheumatology.)

Background: In dermatology, prior authorizations can delay treatment, decrease patient adherence, and deter providers from advocating for their patients. Patients with complex dermatologic conditions, often requiring off-label treatments, may face particularly significant insurance barriers., Objective: Evaluate the effect of prior authorizations in patients with complex dermatologic conditions., Methods: This prospective cohort study assessed patients treated by a dermatologist during 5 months who specialized in complex dermatology. Patients included were older than 18 years, treated at V.P.W.'s rheumatology-dermatology clinic, and prescribed a medication or ordered a diagnostic procedure that elicited an insurance prior authorization. Data on prior authorization outcome, administrative time, and delay to treatment were collected., Results: Of 51 prior authorizations, 51% were initially denied, with systemic medications more likely denied than topical ones (P < .001). Total administrative time spent on 50 prior authorizations tracked was 62.5 hours (median time per prior authorization 30 minutes [interquartile range 17-105 minutes]). Time to access treatment was tracked for 80% of prior authorizations; median delay was 12 days [interquartile range 5.5-23 days]., Limitations: Single-center, single-provider patient panel., Conclusion: Patients with complex dermatologic conditions face a significant barrier to care because of prior authorizations. The administrative burden for provider practices to address these prior authorizations is substantial and may warrant a streamlined system in collaboration with insurers., (Copyright © 2020 American Academy of Dermatology, Inc. Published by Elsevier Inc. All rights reserved.)

Objective: Telemedicine is increasingly being offered to patients for rheumatology care, but few studies have examined factors associated with telemedicine use or outcomes of telemedicine in rheumatology. The objective of this analysis was to determine factors associated with the use of video telemedicine when offered as part of usual care for follow-up of rheumatoid arthritis (RA)., Methods: Individuals in the Alaska Tribal Health System with a diagnosis of RA were recruited when seeing a rheumatologist either in-person or by video telemedicine, both of which were offered as part of usual care. At the study visit, participants completed the Routine Assessment of Patient Index Data 3 (RAPID3) and a telemedicine perception survey and agreed to a medical record review for demographics and disease characteristics. Data from this visit were analyzed to determine factors associated with using telemedicine for RA, compared to being seen in-person only., Results: Of 122 participants enrolled in the study, 56 (46%) had been seen by telemedicine at least once. Factors associated with telemedicine use in univariate analysis included a higher RAPID3 score, a higher number of rheumatologist visits in the preceding year, more positive perceptions of telemedicine, and seeing a physician who used telemedicine more often. On multivariate analysis, these 4 factors all remained significant. Demographic and other disease-related factors or comorbidities were not associated with telemedicine use., Conclusion: When offered as an option for rheumatology care, video telemedicine was more likely to be used by RA patients with higher disease activity and more positive perceptions of telemedicine, and by patients whose physicians used telemedicine more often., (© 2019, American College of Rheumatology.)

Pneumonia is a major cause of morbidity and mortality in the United States. Therefore, prevention of pneumococcal pneumonia by administering effective and well-tolerated vaccines is an important goal, especially in the immunocompromised patients who are at an increased risk of infections. At a large Midwestern Veterans Affairs Rheumatology Clinic, an internal audit revealed a baseline immunization rate of 3%. Through the Lean Six Sigma approach, the investigators sought to increase the rate to 70%. An interprofessional approach incorporating provider education, reinforcement at the point of care, and workflow simplification was sequentially implemented. Lean Six Sigma tools, including process mapping, voice of the customer, and statistical process control charts were utilized. These interventions increased the percentage of eligible patients receiving vaccinations from 3% (n = 19/687) to 23% (n = 11/48) and decreased the vaccine administration time from 15 to 7 minutes. No adverse reactions were reported. This was balanced by an increase in appointment time by 4 minutes in those who received vaccines. The Lean Six Sigma approach was critical to reducing waste and improving value for patients and providers by increasing pneumococcal vaccination rates among the immunocompromised veteran population in a Midwestern Veterans Affairs Rheumatology Clinic.

Objective: Glucocorticoids are common in RA management despite an unfavorable, exposure-dependent risk profile impacted by patient and provider-level factors. Existing work describing glucocorticoid use in RA is not generalizable and does not adequately examine provider factors. We aim to describe how providers prescribe glucocorticoids to commercially insured, newly diagnosed RA patients in the United States., Methods: This was a retrospective cohort study which used the national Optum© administrative database. We identified 9221 adults ages 18-65 with RA diagnosed 2010-2014. We assessed glucocorticoid dispensing 3 months pre-diagnosis through 12months post-diagnosis ("study period"), cumulatively stratified by calendar quarter and prescriber specialty (rheumatologist, primary care, other). We examined prescribing variation among individual rheumatologists by dividing quarterly distribution of per-patient dose and days' supply into quartiles., Results: 6717 (72.8%) patients filled ≥1 glucocorticoid prescription during the study period. 2890 (31.3%) patients received ≥3 months' supply, with median (IQR) daily dose 10 (6.6) mg/day and days' supply 189 (143) days. 52.6% of patients received glucocorticoids 1-3 months post-diagnosis; 29.2% received glucocorticoids 10-12 months post-diagnosis. Among glucocorticoid users post-diagnosis, quarterly median daily dose and days' supply were consistently ≥10 mg/day and ≥30 days, respectively. Rheumatologists prescribed most glucocorticoids, with median per-quarter daily dose and days' supply 10 mg/day and 43-60 days. Individual rheumatologists' prescribing varied widely across all quarters., Conclusion: Among commercially insured incident RA patients, receipt of ≥10 mg/day prednisone equivalent for months is common, typically prescribed by rheumatologists, and persists a year post-diagnosis in 29.2% of patients. Glucocorticoid prescribing varies widely across rheumatologists. Further work is warranted to identify provider factors explaining variation in glucocorticoid prescribing, and assess how these affect health outcomes., (Copyright © 2019 Elsevier Inc. All rights reserved.)

Objective: To assess the attitudes and common practices of adult rheumatologists in the US regarding health care transition (HCT) for young adults with rheumatic diseases., Methods: An anonymous online survey was sent to US adult rheumatologist members of the American College of Rheumatology to collect demographic data and information on attitudes and common practices regarding the transition process., Results: Of 4,064 contacted rheumatologists, 203 (5%) completed the survey. Almost half of respondents (45.1%) were never trained in transition practices, and 74.7% were not familiar with the American Academy of Pediatrics/American Academy of Family Physicians/American College of Physicians Consensus Statement About Transitions for Youth with Special Healthcare Needs. Only 56.2% felt comfortable caring for former pediatric patients. The vast majority of respondents (90.7%) did not have a multidisciplinary transition team, and 37% did not have a plan for transitioning pediatric patients into their practice. Most adult rheumatologists were unsatisfied with the current transition process (92.9%), due to insufficient resources, personnel (91.1%), and time in clinic (86.9%). They also were unsatisfied with referral data received concerning previous treatments (48.9%), hospitalization history (48%), disease activity index (45.1%), medical history summary (43.9%), comorbidities (36.4%), medication list (34.1%), and disease classification (32.6%). Three major barriers to HCT were lack of insurance reimbursement (33.7%), knowledge about community resources (30.8%), and lapses in care between primary provider and specialist (27.8%)., Conclusion: This survey identified substantial gaps in knowledge and resources regarding HCT for young adults with rheumatic diseases. These may be best addressed by further training, research, dedicated resources, adequate payment, and practice guidelines., (© 2019, American College of Rheumatology.)

Background: Medical meetings are a tool to help physicians advance and update their medical knowledge. Their quality is the responsibility of colleges and institutions., Objective: To assess and compare the academic level of four different annual rheumatology meetings., Material and Methods: As a source of information, we used the abstracts published in the supplements of the journal Reumatología Clínica, SE1 Vol. 12, issued in February 2016, SE 1 Vol. 13 issued in February 2017, the electronic application of the 2016 ACR/ARHP of the 2016 American Congress of Rheumatology, devoted to the works presented at the 44th Mexican Congress of Rheumatology (CMR 44), the 45th Mexican Congress of Rheumatology (CMR 45), and the 2016 ACR/ARHP Annual Meeting (ACR 2016), as well as the Web page on the files and abstracts of EULAR 2017, respectively; from each work we compiled information on the major disease being referred to, the type of information provided and the type of report. We should point out that some were combined conditions or designs, from which we selected that which we considered to be the most important., Results: In all, 275, 340, 3275 and 4129 studies were submitted to the XLIV Mexican Congress of Rheumatology, XLV Mexican Congress of Rheumatology, the 2016 ACR/ARHP Annual Meeting and EULAR 2017, respectively. Rheumatoid arthritis was the most common disorder, dealt with in 23%, 26%, 21% and 27% in CMR 44, CMR 45, 2016 ACR and EULAR 2017, respectively, followed by systemic lupus erythematosus; in third place, Mexican congresses reported trials related to systemic vasculitis, whereas spondylitis was the main subject of international congresses. In the case of rheumatoid arthritis, clinical topics accounted for 30% in the Mexican congresses and ACR, and nearly 20% in EULAR. Observational studies accounted for 40% in the Mexican congresses vs. 33% in 2016 ACR and 55% in EULAR 2017. Studies on basic science were minimal in the Mexican congress, whereas in 2016 ACR, they represented 21% and 12% in EULAR 2017., Conclusion: Rheumatology meetings constitute a tool to obtain adequate evidence-based medical knowledge in this important branch of medicine. For our Mexican Congress, we should encourage collaborative efforts between institutions, which will result in a greater number of controlled studies, clinical trials and basic studies that support the quality of the congress. We wish to emphasize that a greater diffusion of other musculoskeletal diseases is needed, not only autoimmune diseases, since the former represent an important percentage of the daily practice., (Copyright © 2018 Sociedad Española de Reumatología y Colegio Mexicano de Reumatología. Publicado por Elsevier España, S.L.U. All rights reserved.)

Objective: To determine modifiable factors associated with poor quality of life (QoL) in patients with axial spondyloarthritis (axSpA)., Methods: Analysis of data from the British Society for Rheumatology Biologics Register in Ankylosing Spondylitis (BSRBR-AS) and validation of a previous model using data from 1810 patients with axSpA recruited during 2012-2017. Data collected included clinical and patient-reported measures. QoL was assessed using the Ankylosing Spondylitis Quality of Life (ASQoL) measure. Linear regression models predicting ASQoL scores were used first to validate a previous model from a national study, to extend this with additional information available in BSRBR-AS and finally to identify a 'de novo' model from BSRBR-AS of which factors impact on poor QoL., Results: Four out of five factors included in a previous model of poor QoL in patients with axSpA were confirmed: Bath Ankylosing Spondylitis Disease Activity Index and Bath Ankylosing Spondylitis Functional Index, fatigue and widespread pain, although the performance of the model was improved by the addition of measures of mood and sleep disturbance. In a de novo model in BSRBR-AS, there were six factors (other than disease activity and function) that predicted ASQoL: depression (β=0.16), sleep disturbance (β=0.08), activity impairment (β=0.04), fibromyalgia (Symptom Severity Scale (β=0.24) and Widespread Pain Index (β=0.10)) and tobacco smoking (β=0.66)., Conclusion: This study confirms that poor QoL in patients with axSpA, in addition to high disease activity and poor function, is independently influenced by sleep disturbance, mood and widespread pain. These additional factors are not considered targets for treatment in current European League Against Rheumatism (EULAR) guidelines for managing the condition., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2020. No commercial re-use. See rights and permissions. Published by BMJ.)

Pharmacovigilance registries of biologics were established to evaluate the risk of adverse events that may be missed in trials due to shorter durations and homogeneous samples. This review will present the strengths and weaknesses of registry data in addressing patient safety issues. Since their inception, scope has broadened because registries represent a relatively inexpensive approach to answering many clinical questions, both research and non-research focused. They achieve high statistical power, allow direct comparability, and offer a level of detail about adverse events not possible with trial data. Registries have been central in clarifying the risk of infection and malignancy with anti-TNF therapy, despite the limitations of selection and channelling bias, incomplete case capture, unmeasured confounding, and the inability to infer causality. Routinely collected data from electronic health records and national audits offer alternative real-world resources, further assisting patients and clinicians in understanding the risks of biologic therapy choices., (© The Author(s) 2020. Published by Oxford University Press on behalf of the British Society for Rheumatology. All rights reserved. For permissions, please email: journals.permissions@oup.com.)

Background: The collaborative initiative of the European Network of Pregnancy Registers in Rheumatology (EuNeP) aims to combine data available in nationwide pregnancy registers to increase knowledge on pregnancy outcomes in women with inflammatory rheumatic diseases (IRD) and on drug safety during pregnancy and lactation. The objective of this study was to describe the similarities and differences of the member registers., Methods: From all registers, information about their structure and design was collected, as well as which parameters regarding demographics, maternal outcomes, treatment, course and outcome of pregnancy, and development of the child were available in the respective datasets. Furthermore, the current recruitment status was reported., Results: The four registers (EGR2 (France), RePreg (Switzerland), RevNatus (Norway), and Rhekiss (Germany)) collect information prospectively and nationwide. Patients can be enrolled before conception or during pregnancy. To date, more than 3500 patients in total have been included, and data on 2200 pregnancies with an outcome are available. The distribution of diagnoses in the respective registers varies considerably, and only three entities (rheumatoid arthritis, psoriatic arthritis, and spondyloarthritis) are captured by all the registers. Broad consistency was found in non-disease-specific data items, but differences regarding instruments and categories as well as frequency of data collection were revealed. Disease-specific data items are less homogeneously collected., Conclusion: Although the registers in this collaboration have similar designs, we found numerous differences in the variables collected. This survey of the status quo of current pregnancy registers is the first step towards identifying data collected uniformly across registers in order to facilitate joint analyses., Trial Registration: Not applicable.

Background: Children with discoid lupus erythematosus (DLE) are at risk for disfigurement and progression to systemic lupus erythematosus (SLE). Consensus is lacking regarding optimal care for children with DLE., Objectives: The aim of this study was to compare practice patterns among paediatric dermatologists/rheumatologists treating paediatric DLE., Methods: An online survey was sent to 292 paediatric rheumatologists in the Childhood Arthritis and Rheumatology Research Alliance and 200 paediatric dermatologists in the Pediatric Dermatology Research Alliance. Consensus was defined as ≥ 70% agreement., Results: Survey response rates were 38% (76 of 200) for dermatology and 21% (60 of 292) for rheumatology. Both specialties agreed that screening labs should include complete blood counts with differential, urinalysis, complement levels, erythrocyte sedimentation rate, antinuclear antibody and other autoantibodies, hepatic function and renal function/electrolytes. Both specialties agreed that arthritis or nephritis should prompt intensified evaluation for SLE. No other patient features achieved consensus as disease-modifying risk factors. Hydroxychloroquine was agreed upon as first-line systemic therapy, but consensus was lacking for second- or third-line treatment., Conclusions: We found few areas of consensus and significant practice differences between paediatric dermatologists and rheumatologists treating DLE. Knowledge gaps include risk factors for SLE, optimal screening and treatment of refractory skin disease., (© 2019 British Association of Dermatologists.)

The status of private rheumatology is known, but there is no information on the kind of patients seen. This study describes the experience over a 3-year period in a private rheumatology practice in the Autonomous Community of Madrid. We collected demographic and descriptive data. Of 706 patients seen, almost half (46%) were there for their first visit, and 12% of patients who had asked for an appointment did not attend. The majority of patients were women (72.4%) with a median age of 44.3 years old (range 3-93). The most frequent diagnoses were osteoarthritis (20.9%), osteopenia/osteoporosis (16.8%), arthralgia (13.4%) and soft tissue disorder (9.6%). The majority of the patients had private insurance with Spanish companies, such as MAPFRE, Adeslas and Asisa. At least one quarter of ancillary tests ordered in the first visit were not revised on a second visit., (Copyright © 2017 Elsevier España, S.L.U. and Sociedad Española de Reumatología y Colegio Mexicano de Reumatología. All rights reserved.)

Background: Chronic rheumatic diseases need long-term treatment and professional supervision. Mobile apps promise to improve the lives of patients and physicians. In routine practice, however, rheumatology apps are largely unknown and little is known about their quality and safety., Objective: The aim of this study was to provide an overview of mobile rheumatology apps currently available in German app stores, evaluate app quality using the Mobile Application Rating Scale (MARS), and compile brief, ready-to-use descriptions for patients and rheumatologists., Methods: The German App Store and Google Play store were systematically searched to identify German rheumatology mobile apps for patient and physician use. MARS was used to independently assess app quality by 8 physicians, 4 using Android and 4 using iOS smartphones. Apps were randomly assigned so that 4 apps were rated by all raters and the remaining apps were rated by two Android and two iOS users. Furthermore, brief app descriptions including app developers, app categories, and features were compiled to inform potential users and developers., Results: In total, 128 and 63 apps were identified in the German Google Play and App Store, respectively. After removing duplicates and only including apps that were available in both stores, 28 apps remained. Sixteen apps met the inclusion criteria, which were (1) German language, (2) availability in both app stores, (3) targeting patients or physicians as users, and (4) clearly including rheumatology or rheumatic diseases as subject matter. Exclusion criteria were (1) congress apps and (2) company apps with advertisements. Nine apps addressed patients and 7 apps addressed physicians. No clinical studies to support the effectiveness and safety of apps could be found. Pharmaceutical companies were the main developers of two apps. Rheuma Auszeit was the only app mainly developed by a patient organization. This app had the highest overall MARS score (4.19/5). Three out of 9 patient apps featured validated questionnaires. The median overall MARS score was 3.85/5, ranging from 2.81/5 to 4.19/5. One patient-targeted and one physician-targeted app had MARS scores >4/5. No significant rater gender or platform (iOS/Android) differences could be observed. The overall correlation between app store ratings and MARS scores was low and inconsistent between platforms., Conclusions: To our knowledge, this is the first study that systematically identified and evaluated mobile apps in rheumatology for patients and physicians available in German app stores. We found a lack of supporting clinical studies, use of validated questionnaires, and involvement of academic developers. Overall app quality was heterogeneous. To create high-quality apps, closer cooperation led by patients and physicians is vital., (©Johannes Knitza, Koray Tascilar, Eva-Maria Messner, Marco Meyer, Diana Vossen, Almut Pulla, Philipp Bosch, Julia Kittler, Arnd Kleyer, Philipp Sewerin, Johanna Mucke, Isabell Haase, David Simon, Martin Krusche. Originally published in JMIR Mhealth and Uhealth (http://mhealth.jmir.org), 05.08.2019.)

Introduction: Many regions in the middle of Germany have a deficit in specialized rheumatological care. A survey was undertaken to investigate whether the regional capacities for rheumatological advanced training are sufficient to provide an adequate number of rheumatologists in the future., Methods: All 91 rheumatologists registered in Saxony, Saxony-Anhalt and Thuringia received a questionnaire that was sent back by 66% of the recipients (23 responses from Saxony, 19 from Saxony-Anhalt, 18 from Thuringia). Of the rheumatologists 41 were in private practice, 19 worked in an inpatient department and the mean duration of professional activity was 18 years., Results: Over the last decade the number of patients treated by rheumatologists in private practices increased from 1200 to 1500 per quarter year (p < 0.001), whereas the number of first consultations rose from 100 to 130 per quarter year (p = 0.06). The waiting time for a first consultation rose from 8 to 11 weeks (p = 0.01), 32% of the responders indicated that the conditions for outpatient treatment had either improved or had remained constant during the last 10 years, whereas 60% reported a mild or marked deterioration and 48% stated that the number of rheumatologists had decreased within the same time frame. Only 20% indicated that they had a definite successor in the practice after retirement. All inpatient departments also had an outpatient office. During the last 10 years, the number of consultations per quarter year decreased from 1100 to 700 (not significant), while the waiting time doubled from 6 to 12 weeks (rounded mean). Of the rheumatologists in private practice eight are currently entitled to provide advanced education in rheumatology, with a median training period of 18 months; however, none of the responding physicians had actually brought assistant doctors to the final examination during the last decade and only one prospective rheumatologist was currently completing training in a private practice setting. Only 6 out of 12 inpatient rheumatological facilities are entitled to educate rheumatologists over the whole training period, 5 facilities were not involved in training at all and 7 indicated that they lacked applications for rheumatology training. During the last 10 years, 37 rheumatologists completed the training of which 18 went into private practice, 8 worked as general practitioners and 29 remained in the region of their initial training., Conclusion: Given the increase in the number of outpatients served, the volume of training activities in rheumatology is hardly sufficient to improve the deficit of rheumatological care in the middle of Germany.

Background/aims: Rheumatology in Korea has rapidly advanced in the 24 years since the subspecialty board certification program was established in 1992. The objective of this investigation was to analyze the distribution of rheumatology practices in Korea in order to better understand the rheumatology workforce., Methods: Using a membership list from the Korean College of Rheumatology (KCR), we obtained information on practicing rheumatologists. We mapped the ratio of rheumatologists to the general population and to patients with rheumatologic disease using data from Statistics Korea and the 2015 Health Insurance Review & Assessment Service (HIRA)., Results: In the 16 administrative districts of Korea in 2015, there were 311 practicing rheumatologists on the list of KCR members. There were 218 members practicing in metropolitan areas and 93 members in the provinces. The mean number of rheumatologists per 100,000 people was 0.60, with 0.33/100,000 in the provinces, but 0.92/100,000 in metropolitan areas, a 2.7-fold difference. The number of rheumatologists per 100,000 patients with chronic rheumatic disease was 17.21 in metropolitan areas but 6.57 in the provinces, according to 2015 HIRA data. This geographic maldistribution emerged as a problem; indeed, the regional disparity in the distribution of Korean rheumatologists was striking when compared to the published medical professional distribution in 2014., Conclusion: Because of the uneven distribution of rheumatologists, it is likely that some patients with chronic rheumatic conditions have limited access to rheumatology care. Thus, a policy-based approach is needed to alleviate this disparity.

Purpose : To highlight the pattern and treatment outcomes of ophthalmologic disorders referred to a private specialist rheumatology clinic. Methods : Retrospective review (January 2015-December 2016) of referrals from Eye Foundation Hospital, Lagos to Arthrimed Specialist Clinic, Lagos. Case records were retrieved and relevant information extracted. Ethical standards were observed. Results : Twenty-two referrals (35 eyes) were received out of 643 patients (3.4%) seen during the study period. The majority were female (63.6%) with mean age 48.9 ± 19.3 years and bilateral disease (59%). Diagnoses included uveitis (45.5%), optic neuritis (36.4%), non-specific autoimmune eye disease (9.1%), keratoconjunctivitis sicca (4.5%), and giant cell arteritis (4.5%). Treatment was with steroids and immunosuppressive agents. Fourteen patients improved (63.6%), five remained unchanged (22.7%), while three worsened (13.6%). Conclusions : Our patients were mostly fourth-decade females with bilateral disease. Uveitis was the commonest presentation, and two-thirds of the treated patients improved after treatment. Early specialist referral and co-management of severe autoimmune eye diseases are desirable.

Objectives: There have been significant advances in axial spondyloarthritis (axSpA), with implications for service delivery. We evaluated the state of axSpA rheumatology services and how people with axSpA perceive their care., Methods: An online patient survey was emailed to all members of the National Ankylosing Spondylitis Society and advertised widely via social media. Separately, a Web-based questionnaire about axSpA services was sent to rheumatologists at all 172 acute hospital trusts in the UK., Results: From the National Ankylosing Spondylitis Society survey, data for 1979 surveys (56% males) were available for analysis. The majority of respondents had longstanding disease and identified their diagnosis as AS, with only 44% aware of the term axSpA. Eighty-two per cent of respondents were currently attending a rheumatologist, with 43% on biologic agents. Satisfaction scores for rheumatology care were high. Respondents' concerns included access during disease flares and adverse effects of analgesics. From the rheumatology survey, the concept and terminology of axSpA was widely accepted by respondents (88%). The majority of centres had at least one rheumatologist with a specialist interest in axSpA (62%), dedicated axSpA clinics (58%) or a multidisciplinary team for axSpA (64%). BASDAI (99%), BASFI (74%) and BASMI (65%) were routinely performed. All centres had access to MRI scans, but scanning protocols varied and were often sub-optimal., Conclusion: Although overall satisfaction with rheumatology care was high, the results indicate significant unmet patient needs and discrepancies in service provision. This information will inform the development of quality standards for axSpA in order to improve quality and deliver equitable care for all patients.