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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

2021; Elsevier BV; Volume: 3; Issue: 10 Linguagem: Inglês

10.1016/s2665-9913(21)00175-2

2665-9913

Jonathan S. Hausmann, Kevin Kennedy, Julia F. Simard, David Liew, Jeffrey A. Sparks, Tarin T Moni, Carly Harrison, Maggie Larché, Mitchell Levine, Sebastian E. Sattui, Teresa Semalulu, Gary Foster, Salman Surangiwala, Lehana Thabane, Richard Beesley, Karen Durrant, Elsa F Mateus, S. Mingolla, Michal Nudel, Candace A Palmerlee, Dawn P. Richards, David Liew, Catherine Hill, Suleman Bhana, Wendy Costello, Rebecca Grainger, Pedro Machado, Philip C Robinson, Paul Sufka, Zachary S. Wallace, Jinoos Yazdany, Emily Sirotich, Philip C. Robinson, Suleman Bhana, Jean W. Liew, Paul Sufka, Namrata Singh, Richard A. Howard, Alfred H.J. Kim, Tiffany Westrich‐Robertson, Emily Sirotich, Edmund Tsui, Alí Duarte‐García, Jeffrey A. Sparks, Herman Tam, Arundathi Jayatilleke, Maximilian F. Konig, Elizabeth R. Graef, Michael Putman, Reema Syed, Peter Korsten, Elsa F Mateus, Sebastian E. Sattui, Zachary S. Wallace, Upton A. Laura, Adam Kilian, Yu Pei Eugenia Chock, Douglas W. White, Geraldine T. Zamora, Lisa S Traboco, Aarat Patel, Rebecca Grainger, Manuel F. Ugarte‐Gil, Milena Gianfrancesco, Isabelle Amigues, Catalina Sánchez-Álvarez, Laura Trupin, Lindsay Jacobsohn, Richard Beesley, Bimba F. Hoyer, Pedro Machado, Kavita Makan, Laure Gossec, Chaudhary Priyank, Jan Leipe, Beth Wallace, Sheila T. Angeles‐Han, Ibrahim Almaghlouth, Wysham D. Katherine, Anthony S. Padula, Françis Berenbaum, Erin M. Treemarcki, Rashmi Sinha, Laura B. Lewandowski, Kate Webb, Kristen Young, Inita Buliņa, Sebastián Herrera, Tamar B. Rubinstein, Marc W. Nolan, Elizabeth Ang, Swamy R. Venuturupalli, Jonathan S. Hausmann, Maureen Dubreuil, Cecilia Pisoni, M. Cosatti, José Luis Michi Campos, Julia F. Simard, Richard Conway, Tiffany M. Peterson, Carly Harrison, Christele Felix, Dawn P. Richards, Laurie Proulx, Akpabio Akpabio, Angus B. Worthing, Lynn Laidlaw, Pankti Reid, Candace A Palmerlee, Maria I. Danila, Sahar Lotfi‐Emran, Ngo Q. Linh, Arnav Agarwal, Paul Studenic, David Liew, Maggie Larché, S. Mingolla, Erick Adrian Zamora, Saskya Angevare, Rashmi Sinha, Karen 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 Giulia Marino, Michal Nudel, Chrisiaan Scott, Cecilia Rodríguez, Ana I. Martín Mancheño, Philip Seo, Rocío V. Gamboa‐Cárdenas, Víctor R. Pimentel-Quiroz, Cristina Reátegui-Sokolova, Mari Kihara, Chung Mun Alice Lin, Dheera Kattula, Girgis Laila, Loreto Carmona, John Wallace, Jinoos Yazdany, Wendy Costello, Monique Gore‐Massy, Laura-Ann Tomasella, Moré A. Kodek,

Long-Term Effects of COVID-19

BackgroundThe 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.MethodsSurvey 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.Findings12 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 Sjögren'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).InterpretationPeople 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.FundingAmerican College of Rheumatology.