key: cord-0821232-d241670x authors: Barbhaiya, Medha; Frey, Marianna B.; Levine, Jonah; Vitone, Gregory; Lally, Lindsay; Lockshin, Michael D.; Bykerk, Vivian; Feldman, Candace H.; Mandl, Lisa A. title: Modification of immunomodulatory medications by rheumatology patients during the peak of the COVID-19 pandemic in New York City date: 2022-05-20 journal: Clin Rheumatol DOI: 10.1007/s10067-022-06203-1 sha: 383d738071a5da75264755c0019df47b702634ec doc_id: 821232 cord_uid: d241670x nan Within the USA, from March through May 2020, New York City was an early coronavirus disease 2019 (COVID-19) "hot spot." Due to concerns about the increased risk of severe illness due to immune dysfunction and the use of immunomodulatory or immunosuppressive medications [1, 2] , patients with systemic rheumatic diseases living in New York City may have modified their immunomodulatory and immunosuppressive medications to mitigate the risk of severe infection. Our study evaluates medication modification during the early stage of the pandemic in the USA by patients followed at a major rheumatology center in New York City. We emailed a secure web-based survey to 26,045 patients ≥ 18 years evaluated at least once by a rheumatologist between April 1, 2018, and April 21, 2020, at our hospital in New York City. Patients completed the survey by email or phone between April 24, 2020, and May 26, 2020. We collected information on potential SARS-CoV-2 exposure, symptoms, and rheumatic disease history. Patients reported any immunomodulatory or immunosuppressive medication use in the previous 6 months and indicated whether they increased, decreased, or discontinued their medication after February 1, 2020 (i.e., during the COVID-19 pandemic), as well as reasons for medication changes. This study was approved by the Hospital for Special Surgery Institutional Review Board. A total of 6357/26,045 respondents (24.4%) answered the medication questions. The mean age of respondents was 59.3 (standard deviation [SD] 15.9) years; 77.6% were female, 82.9% were White, 4.5% were Black, and 7.1% were Hispanic/Latinx. A total of 3111 respondents (48.9%) reported any use of at least one immunomodulatory or immunosuppressive medication in the previous 6 months: 1996 respondents used 1 immunosuppressive or immunomodulatory medication, 828 used 2 medications, and 287 used ≥ 2 medications. Therefore, as some patients reported the use of more than one medication, among the 3111 patients, there were 4585 individual reports of any immunomodulatory/ immunosuppressive medication use: 1170 (25.5%) antimalarials, 1008 (22.0%) biologics, 1216 (26.5%) conventional disease-modifying antirheumatic drugs (DMARDs), 986 (21.5%) corticosteroids, 148 (3.2%) small molecules, and 57 (1.2%) other DMARDs (Table 1) . One-fourth of medications (1157/4585) were modified; of these, 152 were increased (13.1%), 469 were decreased (40.5%), and 536 were discontinued (46.3%) ( Table 1) . For each respondent, we collected only one modification per medication. Among dose reductions, 33.5% were for corticosteroids, 31.6% for biologics, 18.6% for conventional DMARDs, 13.9% for antimalarials, and 2.1% for small molecules. Medication discontinuation was highest for corticosteroids (50.7%), followed by conventional DMARDs (20.0%), biologics (15.9%), antimalarials (9.5%), and small molecules (2.8%). Tumor necrosis factor inhibitors (TNF inhibitors) accounted for most biologic dose reductions (64.2%) and discontinuations (50.6%). Methotrexate accounted for the majority of conventional DMARD dose reductions (67.8%), but less than half (47.7%) of total discontinuations. 42.8% increases in medication doses were for corticosteroids and 24.3% for conventional DMARDs. Medication reductions were advised > 50% of the time by a physician across medication categories, often but not always by a rheumatologist (Supplement). Up to 41% of discontinuations in any medication category were patient-directed (Supplement). During the initial peak of the COVID-19 pandemic in New York City, patients at our large, specialty center modified one-fourth of immunomodulatory/immunosuppressive medications. Across medication categories, over half of medication reductions/discontinuations were recommended by a physician, while up to 41% of discontinuations were patient-directed. This is a description of patient behaviors; we did not perform statistical analyses to avoid biases due to our large numbers and multiple comparisons. Our response rate is acceptable for large surveys [3] . Our findings provide insight into the real-world behavior related to medication use by patients with rheumatic disease, before the first American College of Rheumatology COVID-19 task force guidelines were widely disseminated [4] . Understanding patient and physician behavior during this public health crisis will help guide planning for any COVID-19 surges due to new variants or future pandemics. This work also lays the foundation for longitudinal studies that evaluate the impact of unanticipated medication changes on rheumatic disease flares and outcomes. The online version contains supplementary material available at https:// doi. org/ 10. 1007/ s10067-022-06203-1. Rheumatoid arthritis and the incidence of influenza and influenzarelated complications: a retrospective cohort study Incidence and prevalence of vaccine preventable infections in adult patients with autoimmune inflammatory rheumatic diseases (AIIRD): a systemic literature review informing the 2019 update of the EULAR recommendations for vaccination in adult patients with AIIRD In the 21st century, what is an acceptable response rate? American College of Rheumatology Guidance for the Management of Rheumatic Disease in Adult Patients During the COVID-19 Pandemic: version 1 Acknowledgements Thanks to Deanna Jannat-Khah, DrPH, for her help in assembling the cohort for analysis. Disclosures None.