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.

Figure 1

UpSet plot summarizing risk factors, symptoms, and testing experiences for each participant who met screening criteria and/or attempted to get tested for severe acute respiratory syndrome coronavirus 2. Each vertical line represents an individual participant, and each solid circle indicates that the participant reported that new symptom or testing experience or has the specified risk factor. All participants who received a test tested negative. No respondents were in a long‐term care facility. Exposure indicates that the participant reported known exposure to a COVID‐19–positive patient. Nonautoimmune diagnoses in this cohort are osteoarthritis and fibromyalgia. RDCI, Rheumatic Disease Comorbidity Index.

Figure 2

Word cloud demonstrating the top themes and most frequently seen words in respondents’ free‐response comments.