Modifications in Systemic Rheumatic Disease Medications: Patients' Perspectives During the Height of the COVID-19 Pandemic in New York City

Objective Concerns about severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection may have led to changes or discontinuation of immunosuppressive medications among patients with systemic rheumatic disease. Our goal was to assess patients' perspectives regarding medication modifications and deviations from planned uses during the height of the pandemic. Methods Adult patients of 13 rheumatologists at an academic center with physician-diagnosed rheumatic disease and prescribed disease-modifying medications were interviewed by telephone and asked open-ended questions about the impact of SARS-CoV-2 on their medications. Responses were analyzed using content and thematic analyses to generate categories that described patterns of medication modification. Results A total of 112 patients (mean age 50 years, 86% women, 34% non-White race or Latino ethnicity) with diverse diagnoses (30% lupus, 26% rheumatoid arthritis, 44% other) who were taking various medications were enrolled. Patients reported clinically relevant issues that were iteratively reviewed to generate unique categories of medication modification: medications and increased or decreased risk of SARS-CoV-2 infection; role of hydroxychloroquine; maintaining medication status quo; role of glucocorticoids; increasing or decreasing existing medications in relation to clinical disease activity; postponing infusions; and medication plan if infected by SARS-CoV-2. Some modifications were suboptimal for disease control but were made to mitigate infection risk and to minimize potential harm when patients were unable to obtain laboratory tests and physical examinations due to cessation of in-person office visits. Conclusion During the height of the pandemic, substantial medication modifications were made that, in some cases, were temporizing measures and deviations from planned regimens. Future studies will assess short- and long-term sequelae of these medication modifications.