Abstract
Summary Background The impact and consequences of the COVID-19 pandemic on people with rheumatic disease are unclear. We developed the COVID-19 Global Rheumatology Alliance Patient Experience Survey to assess the effects of the COVID-19 pandemic on people with rheumatic disease worldwide. Methods Survey questions were developed by key stakeholder groups and disseminated worldwide through social media, websites, and patient support organisations. Questions included demographics, rheumatic disease diagnosis, COVID-19 diagnosis, adoption of protective behaviours to mitigate COVID-19 exposure, medication access and changes, health-care access and communication with rheumatologists, and changes in employment or schooling. Adults age 18 years and older with inflammatory or autoimmune rheumatic diseases were eligible for inclusion. We included participants with and without a COVID-19 diagnosis. We excluded participants reporting only non-inflammatory rheumatic diseases such as fibromyalgia or osteoarthritis. Findings 12 117 responses to the survey were received between April 3 and May 8, 2020, and of these, 10 407 respondents had included appropriate age data. We included complete responses from 9300 adults with rheumatic disease (mean age 46 center dot 1 years; 8375 [90 center dot 1%] women, 893 [9 center dot 6%] men, and 32 [0 center dot 3%] participants who identified as non-binary). 6273 (67 center dot 5%) of respondents identified as White, 1565 (16 center dot 8%) as Latin American, 198 (2 center dot 1%) as Black, 190 (2 center dot 0%) as Asian, and 42 (0 center dot 5%) as Native American or Aboriginal or First Nation. The most common rheumatic disease diagnoses included rheumatoid arthritis (3636 [39 center dot 1%] of 9300), systemic lupus erythematosus (2882 [31 center dot 0%]), and Sjogren's syndrome (1290 [13 center dot 9%]). Most respondents (6921 [82 center dot 0%] of 8441) continued their antirheumatic medications as prescribed. Almost all (9266 [99 center dot 7%] of 9297) respondents adopted protective behaviours to limit SARS-CoV-2 exposure. A change in employment status occurred in 2524 (27 center dot 1%) of 9300) of respondents, with a 13 center dot 6% decrease in the number in full-time employment (from 4066 to 3514). Interpretation People with rheumatic disease maintained therapy and followed public health advice to mitigate the risks of COVID-19. Substantial employment status changes occurred, with potential implications for health-care access, medication affordability, mental health, and rheumatic disease activity. Funding American College of Rheumatology. Copyright (c) 2021 Elsevier Ltd. All rights reserved.