1. 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
- Author
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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, Philip C. Robinson, Jean W. Liew, Paul H. Sufka, Namrata Singh, Richard A. Howard, Alfred H.J. Kim, Tiffany Westrich-Robertson, Edmund Tsui, Ali Duarte-Garcia, Jeffrey A. Sparks, Herman Tam, Arundathi Jayatilleke, Maximilian F. Konig, Elizabeth R. Graef, Michael S. Putman, Reema H. Syed, Peter Korsten, Elsa Mateus, Sebastian E. Sattui, Zachary S. Wallace, Upton A. Laura, Kilian Adam, Yu Pei Eugenia Chock, Douglas W. White, Geraldine T. Zamora, Lisa S. Traboco, Aarat M. Patel, Manuel F. Ugarte-Gil, Milena A. Gianfrancesco, Isabelle Amigues, Catalina Sanchez-Alvarez, Laura Trupin, Lindsay R. Jacobsohn, Richard P. Beesley, Bimba F. Hoyer, Pedro M. Machado, Kavita Makan, Laure Gossec, Chaudhary Priyank, Jan Leipe, Beth Wallace, Sheila T. Angeles-Han, Ibrahim A. Almaghlouth, Wysham D. Katherine, Anthony S. Padula, Francis Berenbaum, Erin M. Treemarcki, Rashmi Sinha, Laura B. Lewandowski, Kate Webb, Kristen J. Young, Inita Bulina, Sebastian Herrera Uribe, Tamar B. Rubinstein, Marc W. Nolan, Elizabeth Y. Ang, Swamy R. Venuturupalli, Jonathan S. Hausmann, Maureen Dubreuil, Cecilia N. Pisoni, Micaela A. Cosatti, Jose Campos, Julia F. Simard, Richard Conway, Tiffany M. Peterson, Carly O. Harrison, Christele Felix, Dawn P. Richards, Laurie Proulx, Akpabio A. Akpabio, Angus B. Worthing, Lynn R. Laidlaw, Pankti Reid, Candace A. Palmerlee, Maria I. Danila, Lotfi-Emran Sahar, Ngo Q. Linh, Arnav Agarwal, Paul Studenic, David F.L. Liew, Maggie J. Larche, Serena A.M. Mingolla, Erick A. Zamora, Saskya S. Angevare, Rashmi R. Sinha, Karen L.W. Durrant, Andrea Peirce, Emily C. Somers, Laura C. Cappelli, Brittany A. Frankel, Bharat Kumar, Sonia D. Silinsky Krupnikova, Jorge A. Rosario Vega, Jourdan Frankovich, Ruth Fernandez-Ruiz, Marcela Posada Velásquez, Su-Ann Yeoh, Maria Marino, Chrisiaan Scott, Cecilia Rodríguez, Ana I. Martín Mancheño, Philip Seo, Rocío V. Gamboa-Cárdenas, Victor R. Pimentel-Quiroz, Cristina Reátegui-Sokolova, Mari Kihara, Chung M.A. Lin, Dheera Kattula, Girgis Laila, Loreto Carmona, John Wallace, Monique C. Gore-massy, Laura-Ann Tomasella, and Moré A. Kodek
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medicine.medical_specialty ,business.industry ,Public health ,Immunology ,Articles ,medicine.disease ,Mental health ,Rheumatology ,Rheumatoid arthritis ,Family medicine ,Internal medicine ,Fibromyalgia ,Patient experience ,Pandemic ,Health care ,medicine ,Immunology and Allergy ,business - Abstract
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 46·1 years; 8375 [90·1%] women, 893 [9·6%] men, and 32 [0·3%] participants who identified as non-binary). 6273 (67·5%) of respondents identified as White, 1565 (16·8%) as Latin American, 198 (2·1%) as Black, 190 (2·0%) as Asian, and 42 (0·5%) as Native American or Aboriginal or First Nation. The most common rheumatic disease diagnoses included rheumatoid arthritis (3636 [39·1%] of 9300), systemic lupus erythematosus (2882 [31·0%]), and Sjogren's syndrome (1290 [13·9%]). Most respondents (6921 [82·0%] of 8441) continued their antirheumatic medications as prescribed. Almost all (9266 [99·7%] of 9297) respondents adopted protective behaviours to limit SARS-CoV-2 exposure. A change in employment status occurred in 2524 (27·1%) of 9300) of respondents, with a 13·6% 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.
- Published
- 2021