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Objectives Uncertainty regarding the risk of coronavirus disease 2019 (COVID-19), its complications and the safety of immunosuppressive therapies may drive anxiety among adults and parents of children and young people (CYP) with rheumatic diseases. This study explored trajectories of COVID-related anxiety in adults and parents of CYP with rheumatic diseases. Methods Adults and parents of CYP participating in the international COVID-19 European Patient Registry were included in the current study if they had enrolled in the 4 weeks following 24 March 2020. COVID-related anxiety scores (0–10) were collected weekly for up to 28 weeks. Group-based trajectory models explored COVID-related anxiety clusters in adult and parent populations, with optimal models chosen based on model fit, parsimony and clinical plausibility. Demographic, clinical and COVID-19 mitigation behaviours were compared between identified clusters using univariable statistics. Results In 498 parents of CYP and 2640 adults, four common trajectory groups of COVID-related anxiety were identified in each cohort: persistent extreme anxiety (32% and 17%), persistent high anxiety (43% and 41%), improving high anxiety (25% and 32%) and improving moderate anxiety (11% and 10%), respectively. Few characteristics distinguished the clusters in the parent cohort. Higher and more persistent anxiety clusters in the adult cohort were associated with higher levels of respiratory comorbidities, use of immunosuppressive therapies, older age and greater self-isolation. Conclusions COVID-19-related anxiety in the rheumatic disease community was high and persistent during the COVID-19 pandemic, with four common patterns identified. In the adult cohort, higher COVID-related anxiety was related to perceived risk factors for COVID-19 morbidity and mortality. [ABSTRACT FROM AUTHOR]

Objectives: The experiences of children with pediatric rheumatic diseases (PRD) during the initial phase of the COVID-19 pandemic have not been well-documented. We sought to determine the effects of the COVID-19 pandemic on protective behaviors, healthcare access, medication management, and education among an international cross-sectional parental survey of children with PRDs. Methods: The COVID-19 Global Rheumatology Alliance Patient Experience Survey was distributed online, and parents of children with parental-reported PRD, with or without COVID-19 infection, were eligible to enroll. Respondents described their child's demographics, adoptions of protective behaviors, healthcare access, changes to immunosuppression, and disruptions in schooling. Results: A total of 427 children were included in the analyses. The most common rheumatic disease was juvenile idiopathic arthritis (40.7%), and most children were taking conventional synthetic diseasemodifying antirheumatic drugs (DMARDs) (54.6%) and/or biologic DMARDs (51.8%). A diagnosis of COVID-19 was reported in five children (1.2%), none of whom required hospitalization. Seventeen children (4.0%) had stopped or delayed their drugs due to concern for immunosuppression, most commonly glucocorticoids. Almost all families adopted behaviors to protect their children from COVID-19, including quarantining, reported by 96.0% of participants. In addition, 98.3% of full-time students experienced disruptions in their education, including cancelations of classes and transitions to virtual classrooms. Conclusion: Despite the low numbers of children with PRDs who developed COVID-19 in this cohort, most experienced significant disruptions in their daily lives, including quarantining and interruptions in their education. The drastic changes to these children's environments on their future mental and physical health and development remain unknown. [ABSTRACT FROM AUTHOR]

Objectives Burden of comorbidities are largely unknown in JIA. From 2000, national and international patient registries were established to monitor biologic treatment, disease activity and adverse events in patients with JIA. The aim of this analysis was to investigate in parallel, for the first time, three of the largest JIA registries in Europe/internationally—UK JIA Biologic Registers (BCRD/BSPAR-ETN), German biologic registers (BiKeR/JuMBO), multinational Pharmachild—to quantify the occurrence of selected comorbidities in patients with JIA. Methods Information on which data the registers collect were compared. Patient characteristics and levels of comorbidity were presented, focussing on four key conditions: uveitis, MAS, varicella, and history of tuberculosis. Incidence rates of these on MTX/biologic therapy were determined. Results 8066 patients were registered into the three JIA registers with similar history of the four comorbidities across the studies; however, varicella vaccination coverage was higher in Germany (56%) vs UK/Pharmachild (16%/13%). At final follow-up, prevalence of varicella infection was lower in Germany (15%) vs UK/Pharmachild (37%/50%). Prevalence of TB (0.1–1.8%) and uveitis (15–19%) was similar across all registers. The proportion of systemic-JIA patients who ever had MAS was lower in Germany (6%) vs UK (15%) and Pharmachild (17%). Conclusion This analysis is the first and largest to investigate the occurrence of four important comorbidities in three JIA registries in Europe and the role of anti-rheumatic drugs. Combined, these three registries represent one of the biggest collection of cases of JIA worldwide and offer a unique setting for future JIA outcome studies. [ABSTRACT FROM AUTHOR]

Objective: To evaluate the impact of telemedicine use during the coronavirus disease 2019 (COVID‐19) pandemic on rheumatology trainees. Methods: A voluntary, anonymous, web‐based survey was administered in English, Spanish, or French from August 19 to October 5, 2020. Adult and pediatric rheumatology trainees were invited to participate via social media and email. Using multiple‐choice questions and Likert scales, the survey assessed prior and current telemedicine use, impact on training, and supervision after COVID‐19 prompted rapid telemedicine implementation. Results: Surveys were received from 302 trainees from 33 countries, with 83% in adult rheumatology training programs. Reported telemedicine use increased from 13% before the pandemic to 82% during the pandemic. United States trainees predominantly used video visits, whereas outside the United States telemedicine was predominantly audio only. Most (65%) evaluated new patients using telemedicine. More respondents were comfortable using telemedicine for follow‐up patients (69%) than for new patients (25%). Only 39% of respondents reported receiving telemedicine‐focused training, including instruction on software, clinical skills, and billing, whereas more than half of United States trainees (59%) had training. Postconsultation verbal discussion was the most frequent form of supervision; 24% reported no supervision. Trainees found that telemedicine negatively impacted supervision (50%) and the quality of clinical teaching received (70%), with only 9% reporting a positive impact. Conclusions: Despite widespread uptake of telemedicine, a low proportion of trainees received telemedicine training, and many lacked comfort in evaluating patients, particularly new patients. Inadequate supervision and clinical teaching were areas of concern. If telemedicine remains in widespread use, ensuring appropriate trainee supervision and teaching should be prioritized. [ABSTRACT FROM AUTHOR]

Objective The aim was to evaluate the impact of the coronavirus disease 2019 (COVID-19) pandemic on the clinical experiences, research opportunities and well-being of rheumatology trainees. Methods A voluntary, anonymous, Web-based survey was administered in English, Spanish or French from 19 August 2020 to 5 October 2020. Adult and paediatric rheumatology trainees were invited to participate via social media and email. Using multiple-choice questions and Likert scales, the perceptions of trainees regarding the impact of the COVID-19 pandemic on patient care and redeployment, learning and supervision, research and well-being were assessed. Results There were 302 respondents from 33 countries, with 83% in adult rheumatology training. An increase in non-rheumatology clinical work was reported by 45%, with 68% of these having been redeployed to COVID-19. Overall, trainees reported a negative impact on their learning opportunities during rheumatology training, including outpatient clinics (79%), inpatient consultations (59%), didactic teaching (55%), procedures (53%), teaching opportunities (52%) and ultrasonography (36%). Impacts on research experiences were reported by 46% of respondents, with 39% of these reporting that COVID-19 negatively affected their ability to continue their pre-pandemic research. Burnout and increases in stress were reported by 50% and 68%, respectively. Physical health was negatively impacted by training programme changes in 25% of respondents. Conclusion The COVID-19 pandemic has had a substantial impact on rheumatology training and trainee well-being. Our study highlights the extent of this impact on research opportunities and clinical care, which are highly relevant to future curriculum planning and the clinical learning environment. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Objectives As the coronavirus disease 2019 pandemic developed there was a paucity of data relevant to people living with rheumatic disease. This led to the development of a global, online registry to meet these information needs. This manuscript provides a detailed description of the coronavirus disease 2019 Global Rheumatology Alliance registry development, governance structure, and data collection, and insights into new ways of rapidly establishing global research collaborations to meet urgent research needs. Methods We use previously published recommendations for best practices for registry implementation and describe the development of the Global Rheumatology Alliance registry in terms of these steps. We identify how and why these steps were adapted or modified. In Phase 1 of registry development, the purpose of the registry and key stakeholders were identified on online platforms, Twitter and Slack. Phase 2 consisted of protocol and data collection form development, team building and the implementation of governance and policies. Results All key steps of the registry development best practices framework were met, though with the need for adaptation in some areas. Outputs of the registry, two months after initial conception, are also described. Conclusion The Global Rheumatology Alliance registry will provide highly useful, timely data to inform clinical care and identify further research priorities for people with rheumatic disease with coronavirus disease 2019. The formation of an international team, easily able to function in online environments and resulting in rapid deployment of a registry is a model that can be adapted for other disease states and future global collaborations. [ABSTRACT FROM AUTHOR]

Objectives: COVID-19 outcomes in people with rheumatic diseases remain poorly understood. The aim was to examine demographic and clinical factors associated with COVID-19 hospitalisation status in people with rheumatic disease.Methods: Case series of individuals with rheumatic disease and COVID-19 from the COVID-19 Global Rheumatology Alliance registry: 24 March 2020 to 20 April 2020. Multivariable logistic regression was used to estimate ORs and 95% CIs of hospitalisation. Age, sex, smoking status, rheumatic disease diagnosis, comorbidities and rheumatic disease medications taken immediately prior to infection were analysed.Results: A total of 600 cases from 40 countries were included. Nearly half of the cases were hospitalised (277, 46%) and 55 (9%) died. In multivariable-adjusted models, prednisone dose ≥10 mg/day was associated with higher odds of hospitalisation (OR 2.05, 95% CI 1.06 to 3.96). Use of conventional disease-modifying antirheumatic drug (DMARD) alone or in combination with biologics/Janus Kinase inhibitors was not associated with hospitalisation (OR 1.23, 95% CI 0.70 to 2.17 and OR 0.74, 95% CI 0.37 to 1.46, respectively). Non-steroidal anti-inflammatory drug (NSAID) use was not associated with hospitalisation status (OR 0.64, 95% CI 0.39 to 1.06). Tumour necrosis factor inhibitor (anti-TNF) use was associated with a reduced odds of hospitalisation (OR 0.40, 95% CI 0.19 to 0.81), while no association with antimalarial use (OR 0.94, 95% CI 0.57 to 1.57) was observed.Conclusions: We found that glucocorticoid exposure of ≥10 mg/day is associated with a higher odds of hospitalisation and anti-TNF with a decreased odds of hospitalisation in patients with rheumatic disease. Neither exposure to DMARDs nor NSAIDs were associated with increased odds of hospitalisation. [ABSTRACT FROM AUTHOR]

Context: Public and patient involvement is increasingly becoming an expectation of research funders and policy makers. Not all areas of health research are public‐facing. Here, we outline an approach for building the skills and developing the relationships required for downstream public and patient involvement in pre‐clinical adolescent rheumatology research. Objective: To design a methodology for improving researcher‐adolescent communications specifically aimed at mutual relationship building for PPI. Deliberate and effective preparation in advance of research involvement to improve the downstream success of that involvement. Design: A research seminar and research skills workshop conducted entirely in 'plain English' for adolescents and their siblings aged 10‐20. Upskilling of pre‐clinical researchers for effective public involvement. Setting and participants: Study co‐design between the voluntary charity Irish Children's Arthritis Network and the academic research centre UCD Centre for Arthritis Research. Fifteen adolescents aged 10‐20 years old living with arthritis, four pre‐clinical researchers and one qualitative researcher investigating adolescent or paediatric arthritis. Main variables studied: Relationship building and communications for effective downstream public involvement in pre‐clinical and laboratory research. Results: The methodology outlined here was received extremely positively. Both researchers and adolescents living with arthritis felt more comfortable communicating, more knowledgeable about juvenile arthritis and research, and more able to engage in co‐operative dialogue. Discussion: Engaging early, considering the needs of the community and developing appropriate involvement methodology can enable involvement in pre‐clinical research. Conclusions: Dedicating resources to building relationships and skills necessary for co‐operative research involvement can overcome some of the barriers to public involvement in pre‐clinical and laboratory‐based research. [ABSTRACT FROM AUTHOR]

In the article, the authors discuss the coronavirus disease 2019 (COVID-19) European Patient Registry (EPR) longitudinal study, which showed that 87% of adults and 66% of children will get vaccinated to protect from COVID-19 if vaccines are available. Also cited are the reasons for non-vaccination like lack of information about the vaccines and prior adverse events like anaphylaxis.

Background: To assess the views of juvenile idiopathic arthritis (JIA) patients and their parents on the care and treatment they receive in referral pediatric rheumatology centers throughout Europe. Methods: In a collaboration between physicians and patient associations, a questionnaire was developed, covering various domains of JIA care, including demographics, diagnosis, referrals to various health care professionals, access to pain and fatigue management and support groups, information they received about the disease and awareness of and participation in research. The questionnaire was translated and distributed by parent associations and pediatric rheumatologists in 25 countries, 22 of which were European. After completion the replies were entered on the PRINTO website. Replies could either be entered directly by parents on the website or on paper. In these cases, the replies were scanned and emailed by local hospital staff to Utrecht where they were entered by I.R. in the database. Results: The survey was completed by 622 parents in 23 countries. The majority (66.7%) of patients were female, with median age 10–11 years at the completion of the questionnaire. Frequencies of self-reported JIA categories corresponded to literature. Some patients had never been referred to the ophthalmologist (22.8%) or physiotherapist (31.7%). Low rates of referral or access to fatigue (3.5%) or pain management teams (10.0%), age appropriate disease education (11.3%), special rehabilitation (13.7%) and support groups (20.1%) were observed. Many patients indicated they did not have contact details for urgent advice (35.9%) and did not receive information about immunizations (43.2%), research (55.6%) existence of transition of care clinics (89,2%) or financial support (89.7%). While on immunosuppressive drugs, about one half of patients did not receive information about immunizations, travelling, possible infections or how to deal with chickenpox or shingles. Conclusions: Low rates of referral to health care professionals may be due to children whose illness is well managed and who do not need additional support or information. Improvements are needed, especially in the areas of supportive care and information patients receive. It is also important to improve doctor patient communication between visits. Physicians can be instrumental in the setting up of support groups and increasing patients’ awareness of existing support. Suggestions are given to convey crucial pieces of information structurally and repeatedly to ensure, among other things, compliance. [ABSTRACT FROM AUTHOR]