J Rheumatol 2020 Nov 15. Epub 2020 Nov 15.
MDG is supported by the National Institute of Arthritis and Musculoskeletal and Skin Diseases at the National Institutes of Health (K23 AR073931-01). "The Arthritis and Rheumatic Disease COVID-19 Project" has received sponsorship support specifically from the Patient-Centered Outcomes Institute (PCORI), Eli Lilly and Company, and Janssen Pharmaceutical. M.D. George, MD, MSCE, Assistant Professor, S. Banerjee, MD, Assistant Professor, J.F. Baker, MD, MSCE, Assistant Professor, P.A. Merkel, MD, MPH, Professor, University of Pennsylvania, Philadelphia, Pennsylvania; S. Venkatachalam, PhD, MPH, K. Gavigan, MPH, D. Curtis, BA, W.B. Nowell, PhD, MSW, Global Healthy Living Foundation, Upper Nyack, New York; M.I. Danila, MD, MSc, MSPH, Associate Professor, J.R. Curtis, MD, MS, MPH, Professor, University of Alabama at Birmingham, Birmingham, Alabama, USA. J.R. Curtis and W.B. Nowell contributed equally to this work. MDG has received research support from Bristol-Myers Squibb for unrelated work. JB has received consulting fees from Bristol-Myers Squibb and Gilead. PM has received consulting fees from AbbVie, AstraZeneca, Biogen, Boeringher-Ingelheim, Bristol-Myers Squibb, Celgene, ChemoCentryx, CSL Behring, Forbius, Genentech/Roche, Genzyme/Sanofi, GlaxoSmithKline, InflaRx, Insmed, Jannsen, Kiniksa, Magenta, Pfizer, Sparrow, and Talaris; research support from AstraZeneca, Boeringher-Ingelheim, Bristol-Myers Squibb, Celgene, ChemoCentryx, Forbius, Genentech/Roche, Genzyme/ Sanofi, GlaxoSmithKline, and InflaRx; and royalties from UpToDate. MID has received consulting fees from Amgen, Novartis, and Sanofi Regeneron, and research support from Genentech, Pfizer, Boehringer, and Horizon for unrelated work. JR has received consulting fees from AbbVie, Amgen, Bristol-Myers Squibb, Corrona, Janssen, Lilly, Myriad, Pfizer, Regeneron, Roche, and UCB, and research support from AbbVie, Amgen, Bristol-Myers Squibb, Corrona, Janssen, Lilly, Myriad, Pfizer, Regeneron, Roche, and UCB. DC, KG, WBN, and SV have no personal conflicts of interest to disclose and are employees of the Global Healthy Living Foundation (GHLF). GHLF receives grants, sponsorships and contracts from pharmaceutical manufacturers and private foundations. A full list of GHLF funders is publicly available at www.ghlf.org/our-partners. Address correspondence to Dr. M.D. George, Division of Rheumatology, 5 White Building, 3400 Spruce St., Philadelphia, PA 19104, USA. Email: Accepted for publication November 4, 2020.
Objective: To assess concerns and healthcare-related behaviors of patients with autoimmune rheumatic diseases during the coronavirus disease 2019 (COVID-19) pandemic.
Methods: Adults from the United States with rheumatoid arthritis (RA), psoriatic arthritis (PsA), ankylosing spondylitis (AS), and systemic lupus erythematosus (SLE) from the ArthritisPower Patient-Powered Research Network and CreakyJoints patient community completed surveys. Concerns and behaviors were compared among patients with different autoimmune conditions, disease-modifying antirheumatic drug (DMARD) use, and geographic measures of urban status, income, education, and COVID-19 activity.
Results: Among 1517 participants (925 RA, 299 PsA, 185 AS, 108 SLE), mean age was 55.1 years, 88.3% were female, and 89.5% were White. COVID-19 concerns were similar across the country and were higher in biologic users ( < 0.001). Avoidance of doctor's office visits (56.6%) or laboratory testing (42.3%) and use of telehealth (29.5%) were more common in urban areas. Among participants receiving a DMARD without COVID-19 or other respiratory illness, 14.9% stopped a DMARD, with 78.7% of DMARD interruptions not recommended by a physician. DMARD stopping was more common in participants with lower socioeconomic status (SES) and in participants who avoided an office visit (OR 1.46, 95% CI 1.04-2.04) or reported lack of telehealth availability OR 2.26 (95% CI 1.25-4.08).
Conclusion: In the early months of the COVID-19 pandemic, patients with RA, PsA, AS, and SLE frequently avoided office visits and laboratory testing. DMARD interruptions commonly occurred without the advice of a physician and were associated with SES, office visits, and telehealth availability, highlighting the need for adequate healthcare access and attention to vulnerable populations during the pandemic.