Global Rheumatology Alliance registry explores pandemic impact on patients’ lives

Rheumatology patients worldwide maintained their usual treatments and followed public health advice to reduce the risk of SARS2-CoV-2 infection during the early months of the COVID-19 pandemic.

More than 10,000 adults with rheumatic disease from 90 countries responded to the online COVID-19 Global Rheumatology Alliance Patient Experience Survey conducted in April 2020.

Most respondents were women (90.1%), from the Americas (65.7%) or Europe (29.0%), living with rheumatoid arthritis (39.1%) or lupus (31.0%).

The most commonly reported antirheumatic medications taken within the previous three months were csDMARDs (71·4%), systemic glucocorticoids (34·9%), and biologic DMARDs (31·1%).

The study, published in The Lancet Rheumatology, found 5.5% of patients reported a COVID-19 diagnosis, with most self diagnosed or diagnosed by a healthcare provider on the basis of symptoms.

Most patients (99.7%) adopted at least one protective behaviour such as quarantining (85.5%), physical distancing (77.5%), and using gloves, masks or both (49.8%).

Face-to face consultations with their rheumatologist were uncommon (9.9%) with other communication strategies including telephone (24.3%), email or patient portal (17.4%), social media and texting (8.3%) and telemedicine (6.0%).

Of concern, 11·3% could not communicate with their rheumatologist by any method.

“How this could magnify existing disparities in rheumatology care related to access to technology and the ability to use telemedicine remains to be elucidated,” the investigators said.

More than a quarter of patients (27.1%) experienced a change in employment status compared to January 2020 – typically from full time to part-time or unemployed – while most full-time students (68.8%) also transitioned to virtual classes.

Most respondents (82·0%) continued their prescribed antirheumatic medications despite the pandemic.

The study’s investigators, including Australians Professor Catherine Hill, Associate Professor Phil Robinson and Dr David Liew, said the survey results complement those from physician-reported registries, medical records, and claims databases.

“Understanding the early behaviours of people with inflammatory and autoimmune conditions is necessary to assess the effects of the pandemic on this population, and not only those who became infected with SARS-CoV-2,” they said.

“A far-reaching consequence of the pandemic at the time of data collection was the abrupt change to employment, and many people with rheumatic disease were faced with delayed or reduced income.”

“Further work should address the consequences of employment status changes for health-care access, medication affordability, mental health, and rheumatic disease activity.”

A Comment article in the journal reiterated that patients with inflammatory or autoimmune rheumatic diseases should be included among people considered clinically vulnerable to COVID-19.

“The high prevalence of mild COVID-19 in patients with rheumatic disease might be associated with ongoing anti-inflammatory or immunomodulating treatments frequently used in these conditions,” they said.

“Notably, the risk of developing severe COVID-19 is particularly high in patients with rheumatic disease who have pre-existing interstitial lung disease and in the subgroup of those with connective tissue disease.”

“In consideration of the unpredictable succession of pandemic waves and the appearance of more virulent SARS-CoV-2 variants, verifying the effect of vaccination against COVID-19 for protection against the virus, and its association with ongoing treatments in patients with inflammatory or autoimmune rheumatic diseases who are more prone to this infectious disease, is necessary.”

Professor Catherine Hill, from the University of Adelaide and Queen Elizabeth Hospital, told the limbic that the same survey in Australian patients had shown similar results.

“Our patients were doing surprisingly well from a mental health perspective. 84% rated their mental health as excellent to good.”

“The patients really did pay attention to the public advice to mitigate the risks.”

“I am getting the impression from the UK that with all of the restrictions gone, the immunosuppressed patients are feeling anxious because they know that vaccination doesn’t work as well for them and they are at risk.”

Professor Hill said the amount of movement in employment was a surprising finding in the global study.

“I think it really is slightly worrying about how many patients gave up work and weren’t looking for work. Hopefully they will go back into the workplace but it’s worrisome as clearly they are thinking that their work is a place of risk.”

She said not many patients had issues getting their medications although there is an impending tocilizumab short supply.

Results from a follow-up ARAD survey of 1,000 patients, including additional questions on vaccine hesitancy, are pending.

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