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 US. Methods Participants in a US‐wide longitudinal observational registry responded to a supplemental COVID‐19 questionnaire by email on March 25, 2020 about their symptoms, COVID‐19 testing, healthcare changes, and related experiences during the prior two 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 7,061 participants invited, 530 responded, with RA the most frequent diagnosis (61%). Eleven met COVID‐19 screening criteria, of which two sought testing unsuccessfully. Six others sought testing, three were successful, and all were negative. Not quite half (42%) reported a change to their care in the prior two 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 two weeks, many with rheumatic diseases already had important changes to their healthcare, with many altering medications without professional consultation or due to 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.