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Since January 2020 Elsevier Has Created a COVID-19 Resource Centre with Free Information in English and Mandarin on the Novel Coronavirus COVID- 19 Since January 2020 Elsevier has created a COVID-19 resource centre with free information in English and Mandarin on the novel coronavirus COVID- 19. The COVID-19 resource centre is hosted on Elsevier Connect, the company's public news and information website. Elsevier hereby grants permission to make all its COVID-19-related research that is available on the COVID-19 resource centre - including this research content - immediately available in PubMed Central and other publicly funded repositories, such as the WHO COVID database with rights for unrestricted research re-use and analyses in any form or by any means with acknowledgement of the original source. These permissions are granted for free by Elsevier for as long as the COVID-19 resource centre remains active. Articles Immediate effect of the COVID-19 pandemic on patient health, health-care use, and behaviours: results from an international survey of people with rheumatic diseases Jonathan S Hausmann, Kevin Kennedy, Julia F Simard, Jean W Liew, Jeffrey A Sparks, Tarin T Moni, Carly Harrison, Maggie J Larché, Mitchell Levine, Sebastian E Sattui, Teresa Semalulu, Gary Foster, Salman Surangiwala, Lehana Thabane, Richard P Beesley, Karen L Durrant, Elsa F Mateus, Serena Mingolla, Michal Nudel, Candace A Palmerlee, Dawn P Richards, David F L Liew, Catherine L Hill, Suleman Bhana, Wendy Costello, Rebecca Grainger, Pedro M Machado, Philip C Robinson, Paul Sufka, Zachary S Wallace, Jinoos Yazdany, Emily Sirotich, on behalf of the COVID-19 Global Rheumatology Alliance* Summary Background The impact and consequences of the COVID-19 pandemic on people with rheumatic disease are unclear. Lancet Rheumatol 2021 We developed the COVID-19 Global Rheumatology Alliance Patient Experience Survey to assess the effects of the Published Online COVID-19 pandemic on people with rheumatic disease worldwide. July 22, 2021 https://doi.org/10.1016/ S2665-9913(21)00175-2 Methods Survey questions were developed by key stakeholder groups and disseminated worldwide through social See Online/Comment media, websites, and patient support organisations. Questions included demographics, rheumatic disease diagnosis, https://doi.org/10.1016/ COVID-19 diagnosis, adoption of protective behaviours to mitigate COVID-19 exposure, medication access and S2665-9913(21)00243-5 changes, health-care access and communication with rheumatologists, and changes in employment or schooling. *Members are listed in the Adults age 18 years and older with inflammatory or autoimmune rheumatic diseases were eligible for inclusion. We appendix (pp 44–45) included participants with and without a COVID-19 diagnosis. We excluded participants reporting only Division of Rheumatology and non-inflammatory rheumatic diseases such as fibromyalgia or osteoarthritis. Clinical Immunology, Beth Israel Deaconess Medical Center, Boston, MA, USA Findings 12 117 responses to the survey were received between April 3 and May 8, 2020, and of these, (J S Hausmann MD); Division of 10 407 respondents had included appropriate age data. We included complete responses from 9300 adults with Immunology, Boston Children’s rheumatic disease (mean age 46·1 years; 8375 [90·1%] women, 893 [9·6%] men, and 32 [0·3%] participants who Hospital, Boston, MA, USA (J S Hausmann); Harvard identified as non-binary). 6273 (67·5%) of respondents identified as White, 1565 (16·8%) as Latin American, Medical School, Boston, MA, 198 (2·1%) as Black, 190 (2·0%) as Asian, and 42 (0·5%) as Native American or Aboriginal or First Nation. The USA (J S Hausmann); most common rheumatic disease diagnoses included rheumatoid arthritis (3636 [39·1%] of 9300), systemic lupus Department of Health Research erythematosus (2882 [31·0%]), and Sjögren’s syndrome (1290 [13·9%]). Most respondents (6921 [82·0%] of 8441) Methods, Evidence and Impact (K Kennedy MA, continued their antirheumatic medications as prescribed. Almost all (9266 [99·7%] of 9297) respondents adopted Prof M Levine MD, G Foster PhD, protective behaviours to limit SARS-CoV-2 exposure. A change in employment status occurred in Prof L Thabane PhD, 2524 (27·1%) of 9300) of respondents, with a 13·6% decrease in the number in full-time employment (from E Sirotich PhD), Department of 4066 to 3514). Biochemistry and Biomedical Sciences (T T Moni BSc), Divisions of Rheumatology/ Interpretation People with rheumatic disease maintained therapy and followed public health advice to mitigate the Clinical Immunology and risks of COVID-19. Substantial employment status changes occurred, with potential implications for health-care Allergy (Prof M J Larché PhD), access, medication affordability, mental health, and rheumatic disease activity. Department of Medicine (G Foster, Prof M Levine, T Semalulu MD), Department of Funding American College of Rheumatology. Clinical Pharmacology and Toxicology (Prof M Levine), Copyright © 2021 Elsevier Ltd. All rights reserved. McMaster University, Hamilton, ON, Canada; Department of Epidemiology Introduction behaviour to reduce their risk of infection with the and Population Health, and People with rheumatic disease are at increased risk SARS-CoV-2 virus. Division of Immunology and of infection due to immune dysregulation and the The pandemic also caused substantial disruptions in Rheumatology, Department of Medicine, Stanford School of 1,2 use of immunosuppressive medications. Behavioural health-care delivery, including the delay or cancellation of Medicine, Stanford, CA, USA changes that could mitigate these risks are often clinic visits, infusions, and procedures4 and impaired (J F Simard ScD); Department of discussed as part of the shared decision making that access to some antirheumatic medications because Medicine, Boston University 3 5 School of Medicine, Boston, occurs during the management of rheumatic diseases. these were diverted to prevent or treat COVID-19. MA, USA (J W Liew MD); However, at the beginning of the COVID-19 pandemic, These challenges also greatly affected employment and Division of Rheumatology, little was known to inform discussions about the risks education, and consequently, access to health insurance Inflammation, and Immunity, of COVID-19 in people with these rheumatic diseases. and the ability to obtain health care.6 Understanding the Department of Medicine, Brigham and Women’s As a result, people with rheumatic diseases faced effect of the pandemic on people with rheumatic disease Hospital, Boston, MA, USA substantial challenges in deciding how to modify their might help rheumatologists better address their patients’ (J A Sparks MD); LupusChat, www.thelancet.com/rheumatology Published online July 22, 2021 https://doi.org/10.1016/S2665-9913(21)00175-2 1 Articles New York, NY, USA (C Harrison BSc); Division of Research in context Rheumatology, Department of Medicine, Hospital for Special Evidence before this study behaviours such as physical distancing and mask-wearing and Surgery, New York, NY, USA We searched PubMed for articles published up to avoided potential high-risk exposures; the proportion of (S E Sattui MD); School of March 1, 2020, regarding the risks of infection in patients with participants reporting a diagnosis of COVID-19 during this time Medicine, Queen’s University, rheumatic disease. We included the Medical Subject Headings period was low. Respondents largely continued their use of Kingston, ON, Canada (S Surangiwala BSc); Juvenile “rheumatology” OR “rheumatic diseases” AND “infections” antirheumatic and immunosuppressive drugs. More than a Arthritis Research, Tonbridge, AND “risk.” We did not restrict our search by language or type of quarter of respondents had changes in employment status, UK (R P Beesley BSc); European publication. We found multiple studies showing that people with decreases in the number of full-time employees while the Network for Childhood Arthritis, Tonbridge, UK with rheumatic disease are at increased risk of infection due to number of those unemployed increased. Our study (R P Beesley); immune dysregulation and the use of immunosuppression. complements and contextualises data gathered from other Autoinflammatory Alliance, We then did a Medical Subject Headings search with sources, such as medical records, claims databases, and San Francisco, CA, USA “rheumatology” OR “rheumatic diseases AND “COVID-19” AND physician-entered registries. (K L Durrant BSN); Portuguese “behavior” OR “patient reported outcome measures” to our League Against Rheumatic Implications of all the available evidence search algorithm and no relevant articles were found. At the Diseases, Comprehensive Understanding the behaviours and access to care among people Health Research Centre, Lisbon, beginning of the COVID-19 pandemic, little was known about with rheumatic disease during the early phase of the pandemic Portugal (E F Mateus PhD); the risks of COVID-19 in people with rheumatic disease or how Italian National Association of is essential to inform clinical decision making and structural people with rheumatic disease changed their behaviours People with Rheumatic and changes required within health-care systems. Given the Rare Diseases, Brindisi, Italy because of the pandemic. Among this population, the impact of substantial changes to employment in people with rheumatic (S Mingolla MD); The Israeli the pandemic on health-care access, use of health-care systems, disease, policies that promote remote working might help association for RMDs patients and employment had not been well-characterised. “Mifrakim Tz’eirim”, Haifa, them to continue working while avoiding
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