Experiences of Patients With Rheumatic Diseases in the United States During Early Days of the COVID‐19 Pandemic

Abstract

Objective. Patients with rheumatic diseases such as rheumatoid arthritis (RA) and lupus have increased risk of infection and are treated with medications that may increase this risk yet are also hypothesized to help treat COVID-19. We set out to understand how the COVID-19 pandemic has impacted the lives of these patients in the United States.Methods. Participants in a US-wide longitudinal observational registry responded to a supplemental COVID-19 questionnaire by e-mail on March 25, 2020, about their symptoms, COVID-19 testing, health care changes, and related experiences during the prior 2 weeks. Analysis compared responses by diagnosis, disease activity, and new onset of symptoms. Qualitative analysis was conducted on optional free-text comment fields.Results. Of the 7061 participants invited to participate, 530 responded, with RA as the most frequent diagnosis (61%). Eleven participants met COVID-19 screening criteria, of whom two sought testing unsuccessfully. Six others sought testing, three of whom were successful, and all test results were negative. Not quite half of participants (42%) reported a change to their care in the prior 2 weeks. Qualitative analysis revealed four key themes: emotions in response to the pandemic, perceptions of risks from immunosuppressive medications, protective measures to reduce risk of COVID-19 infection, and disruptions in accessing rheumatic disease medications, including hydroxychloroquine.Conclusion. After 2 weeks, many participants with rheumatic diseases already had important changes to their health care, with many altering medications without professional consultation or because of hydroxychloroquine shortage. As evidence accumulates on the effectiveness of potential COVID-19 treatments, effort is needed to safeguard access to established treatments for rheumatic diseases.

Capturing Patient‐Reported Outcomes During the COVID‐19 Pandemic: Development of the COVID‐19 Global Rheumatology Alliance Patient Experience Survey

“…These included whether their rheumatic disease or immunosuppressive treatments increased their risk of COVID-19 infection, or of poor outcomes should they become infected, if changes to their medications were desirable, and if their ability to obtain their medications would be impaired, as rheumatic disease drugs were being used to treat COVID-19 [2][3][4]. In the first two weeks of the pandemic, almost half of patients in one US cohort described significant disruption to their rheumatology care, including disrupted or postponed appointments, and self-imposed or physician-directed changes to medications [5].…”

The impact of the COVID-19 Pandemic on Patients with Chronic Rheumatic Diseases: A Study in 15 Arab Countries

“…Whether they have a higher risk of infection with SARS-CoV-2 is uncertain (7)(8)(9)(10)(11)(12), and, although several recommendations were developed worldwide (13)(14)(15)(16)(17), strong evidence is lacking to guide treatment decisions. Moreover, di culty to access the rheumatology clinic drove some patients to self-modify their treatment (18), which put them, along with the signi cant stress factor, at high risk of CRD are.…”

ReumaCoV Brasil Registry: Brazilian Study of Patients with Immuno-mediated Chronic Inflammatory Diseases Infected by SARS-CoV-2 

“…It is worthy emphasizing this is a complex binomial with many factors involved, such as disease activity, age, comorbidities and drugs, such as glucocorticoids (GCs), conventional synthetic, speci c target or biological disease-modifying anti-rheumatic drugs (csDMARD, stDMARD or bioDMARD, respectively) and immunosuppressants [5]. Considering a possibly poorer evolution of SARS-CoV-2 infection in patients with IMRD, a large amount of questions have been posed regarding the impact of COVID-19 in the beginning of the pandemic, including withdrawal or spacing of medications, hospitalization, need of mechanical ventilation and mortality rate [6][7][8].…”