Authors: Jonathan S. Hausmann, MD, Emily Sirotich BSc, et al.
Contributors: Maha Ikram, Richard A. Howard, Tarin Moni, Emily Sirotich, John Wallace
(on behalf of the GRA lay summaries sub-group)
During the treatment and management of rheumatic diseases, physicians often discuss behavioural changes to lessen these risks with patients. However, at the beginning of the Coronavirus disease 2019 (COVID-19) pandemic, we did not have enough information to discuss the risks of COVID-19 in people with rheumatic diseases. As a result, people with rheumatic diseases struggled with deciding how to modify their medications and behaviours to reduce their risk of infection.
The pandemic also caused significant disruptions in healthcare delivery, including the delay or cancellation of clinic visits, infusions, and procedures, and difficult access to some antirheumatic medications to prevent or treat COVID-19. These challenges had a large effect on employment and education, and as a result, access to healthcare and health insurance. Understanding the pandemic’s impact on people with rheumatic disease may help address patients’ needs and inform policies to protect this potentially vulnerable population.
What was done?
The COVID-19 Global Rheumatology Alliance (C19-GRA) Patient Experience Survey was launched in April 2020 to understand the impacts of the COVID-19 pandemic on this patient population from the patients’ perspective. This international survey was developed in collaboration with key stakeholders, including patients, patient organizations, patient partners, clinicians, epidemiologists, and researchers to ensure culturally diverse and appropriate research focus. Data from this survey was analyzed to describe the impacts of the COVID-19 pandemic on healthcare access, protective health behaviours, employment, and educational opportunities in adults with rheumatic disease.
What was found?
This study reported on 9,300 adult responses from the survey. The majority of the respondents were female (90.1%) and the mean age was 46.1 years. Of these respondents, 39.1% reported being diagnosed with rheumatoid arthritis, 31.0% with systemic lupus erythematosus (SLE), and 13.9% with Sjogren’s syndrome. Most (82.0%) continued taking their antirheumatic medications, and 99.7% adopted protective behaviors to limit their exposure to COVID-19. A change in employment status was reported by 27.1% of respondents, accompanied with a 14% decrease in full-time employment status and 47.4% increase in unemployment. The detailed breakdown of survey results are shown in Table 2.
Table 2. Survey Results
|Nationality of participant||Americas (65.7%)
Latin American (16.8%)
Native American/Aboriginal/First Nations (0.5%)
|COVID-19 diagnosis||Yes (5.5%)
|Communication with a rheumatologist||Telephone (24.3%)
Email/patient portal (17.4%)
Office visit (9.9%)
Other/social media and texting (8.3%)
No reason to contact rheumatologist (35.5%)
Unable to communicate (11.3%)
|Protective behaviors||Adopted at least one (99.7%)
Social distancing (77.5%)
Using gloves and/or masks (49.8%)
Adopted none (0.3%)
|Antirheumatic medication use||Continued use (82.0%)
Discontinued at least one medication (18%)
|Engaged in risky activities||Yes (22.9%)
One activity (84.6%)
Two activities (13.8%)
Three or more activities (1.6%)
|Risky activities||Visited facility managing COVID-19 (13.4%)
Close contact with a confirmed/probable case of COVID-19 (4.3%)
Travelled to an area where COVID-19 had been highly prevalent (4.0%)
|Changes in employment/education||Employment change (27.1%)
Left full-employment position (21.9%)
Unemployment increase: 47.4%
Transition to virtual classes (17.3%)
Continued in-person classes (1.7%)
Other changes (28.9%)
What does this mean?
Our study shows that almost all respondents (99.7%) adopted protective behaviours during the early phase of the pandemic. However, 23% of respondents engaged in activities that could increase their risk of COVID-19 exposure, such as going to a healthcare facility where COVID-19 was managed. The pandemic also had severe effects on participants’ employment and education, with an increase in unemployment and most students transitioning to virtual classes.
The majority of participants continued their antirheumatic medications, including immunosuppressants. This practice aligns with current recommendations for people with rheumatic conditions during the pandemic, which were not available at the time of the survey. The presence of rheumatic disease and the decision to continue immunosuppression may have created an increased perceived risk of infection, which perhaps explains the frequent use of protective behaviours and avoidance of potential exposures to COVID-19. Concerningly, a portion of respondents indicated they could not communicate with their rheumatologist, perhaps because of the closures of many clinics and time taken to adapt to new types of healthcare delivery.
The impact of the COVID-19 pandemic on employment in people with rheumatic disease is harder to analyze because of the work limitations and lower workforce participation already present in this group, even for younger people. The loss of employer-sponsored health insurance could be particularly damaging for those living in countries without universal health care, who may be unable to afford out-of-pocket medical costs. Policies that promote remote working may help people with rheumatic diseases continue working while avoiding potentially high-risk exposures.