Immediate effect of the COVID-19 pandemic on patient health, health-care use, and behaviours: results from an international survey of people with rheumatic diseases

Abstract

Background The impact and consequences of the COVID-19 pandemic on people with rheumatic disease are unclear. We developed the COVID-19 Global Rheumatology Alliance Patient Experience Survey to assess the effects of the COVID-19 pandemic on people with rheumatic disease worldwide.Methods Survey questions were developed by key stakeholder groups and disseminated worldwide through social media, websites, and patient support organisations. Questions included demographics, rheumatic disease diagnosis, COVID-19 diagnosis, adoption of protective behaviours to mitigate COVID-19 exposure, medication access and changes, health-care access and communication with rheumatologists, and changes in employment or schooling. Adults age 18 years and older with inflammatory or autoimmune rheumatic diseases were eligible for inclusion. We included participants with and without a COVID-19 diagnosis. We excluded participants reporting only non-inflammatory rheumatic diseases such as fibromyalgia or osteoarthritis. Findings 12 117 responses to the survey were received between April 3 and May 8, 2020, and of these, 10 407 respondents had included appropriate age data. We included complete responses from 9300 adults with rheumatic disease (mean age 46•1 years; 8375 [90•1%] women, 893 [9•6%] men, and 32 [0•3%] participants who identified as non-binary). 6273 (67•5%) of respondents identified as White, 1565 (16•8%) as Latin American, 198 (2•1%) as Black, 190 (2•0%) as Asian, and 42 (0•5%) as Native American or Aboriginal or First Nation. The most common rheumatic disease diagnoses included rheumatoid arthritis (3636 [39•1%] of 9300), systemic lupus erythematosus (2882 [31•0%]), and Sjögren's syndrome (1290 [13•9%]). Most respondents (6921 [82•0%] of 8441) continued their antirheumatic medications as prescribed. Almost all (9266 [99•7%] of 9297) respondents adopted protective behaviours to limit SARS-CoV-2 exposure. A change in employment status occurred in 2524 (27•1%) of 9300) of respondents, with a 13•6% decrease in the number in full-time employment (from 4066 to 3514).Interpretation People with rheumatic disease maintained therapy and followed public health advice to mitigate the risks of COVID-19. Substantial employment status changes occurred, with potential implications for health-care access, medication affordability, mental health, and rheumatic disease activity.Funding American College of Rheumatology.

DMARD disruption, disease flare, and prolonged symptom duration after acute COVID-19 among participants with rheumatic disease: A prospective study

“…Medication disruption may have contributed to flare and increased disease activity that persisted through to the time of survey completion. Prior studies have focused mainly on DMARD changes early in the pandemic related to concerns about drug supply or immunosuppression (32)(33)(34). Other studies have focused on temporary medication changes after COVID-19 vaccination and have found little evidence of increased risk of flare (35)(36)(37)(38).…”

Vaccine hesitancy and access to psoriasis care in the COVID-19 pandemic: findings from a global patient-reported cross-sectional survey

“…These participants were more likely to have higher disease activity 21 . The COVID-19 Global Rheumatology Alliance (GRA) Patient Experience Survey of 9,300 participants reported later in the pandemic, and found 11% of patients had not been able to communicate with their rheumatologist 22 . There are limited published data in psoriasis or other inflammatory diseases evaluating patient characteristics associated with disrupted care.…”

Lessons from experiences of accessing healthcare during the pandemic for remobilizing rheumatology services: a national mixed methods study

“…Our study included people with both inflammatory and non-inflammatory MSK conditions in well-characterized cohorts of real-world patients [ 33 ], pre-defined by symptoms or a clinician-confirmed diagnosis as opposed to convenience samples. Much of the literature to date on the impact of the COVID-19 pandemic on individuals with rheumatic and MSK conditions has focused on the perceived risks of COVID-19 and immunosuppressive medication, decisions to stop/continue medication, access to medication and disruptions to specialist healthcare services [ 21 , 34 , 35 ]. We specifically explored access to primary as well as secondary care–based services.…”