Patients With Rheumatic Disease Continued Medication, Followed Prophylaxis During Early COVID-19

Patients with rheumatic disease reported significant employment status changes, which may imply issues with healthcare access, affordable medication, mental health concerns, and rheumatic disease activity. However, they tended to follow public health advice and continued therapy to mitigate the risk of COVID-19 diagnosis.

Patients with rheumatic disease tended to follow public health advice and continued therapy to mitigate the risk of COVID-19 diagnosis, according to a study published in The Lancet.1 Participants also reported significant employment status changes, which may imply issues with healthcare access, affordable medication, mental health concerns, and rheumatic disease activity.

“People with rheumatic disease are at increased risk of infection due to immune dysregulation and the use of immunosuppressive medications.Behavioral changes that could mitigate these risks are often discussed as part of the shared decision making that occurs during the management of rheumatic diseases,” investigators stated. “However, at the beginning of the COVID-19 pandemic, little was known to inform discussions about the risks of COVID-19 in people with these rheumatic diseases. As a result, people with rheumatic diseases faced substantial challenges in deciding how to modify their behavior to reduce their risk of infection with the SARS-CoV-2 virus.”

Investigators created the COVID-19 Global Rheumatology Alliance Patient Experience Survey to determine the effect of the pandemic on patients with rheumatic diseases worldwide, including patient-reported outcomes and health-related behaviors.

Patients aged 18 years or older with rheumatic diseases were eligible to participant in the survey which took place between April 3 and May 8, 2020. Surveys were distributed through social media, websites, and patient support organizations. Participants reported their demographics (including age, gender, country of residence, medications, and ethnicity), rheumatic disease diagnosis, if they developed COVID-19, their access to medication and healthcare, any changes in protective behaviors, communication with their rheumatologist, and any changes in employment or schooling. Tobacco smoking status and comorbidities were also recorded. Patients were included with and without a COVID-19 diagnosis, however, they were asked to clarify if COVID-19 was diagnosed by a healthcare provider, via laboratory testing, or self-diagnosed.

Out of 12117 responses, 9300 adults with rheumatic disease were included in the study. The mean age was 46.1 years, 90.1% of participants were women, and 67.5% identified as White. A total of 39.1% (3636) of respondents had a rheumatoid arthritis diagnosis, followed by 31.0% (2882) with systemic lupus erythematosus, and 13.9% (1290) with Sjögren’s syndrome. The survey collected responses from over 90 countries, most predominantly in the Americas and Europe.

Nearly all (99.7%, 9266) participants reported using protective behaviors to limit the exposure to COVID-19. These included quarantining (85.5%), physical distancing (77.5%), and using masks, gloves, or a combination of both (49.8%). Most (82.0%) participants continued to use their antirheumatic medications, however, 18.0% discontinued for lack of efficacy, immunosuppression concerns, or pharmacy supply issues. Currently, it is recommended that patients with rheumatic disease continue their medications, however, these recommendations were not yet available at the time this survey was conducted.

Of the 5.5% of participants that reported a COVID-19 diagnosis, nearly half (43.7%) were self-diagnosed. Investigators note that people with rheumatic diseases may be more likely to be tested for COVID-19 because of their rheumatic disease status and comorbidities.

Although 43.7% of participants were employed full-time as of January 1, 2020, and 15.4% were employed part-time, a change in employment status was reported in 27.1% (2524) participants, including a 13.6% decrease in full-time employment. Further changes in full-time students were also reported, as 68.8% transitioned to virtual classes, 17.3% had their classes cancelled, and only 1.7% continued attending classes in person.

When asked about communication with their current rheumatologist, 24.3% (2252) of participants spoke to their clinician by telephone, 17.4% (1611) used email or a patient portal, 9.9% (919) were seen in-office, and 6.0% (552) used telemedicine. Additionally, 35.5% (3291) stated they had no reason to contact their rheumatologist during this time and 11.3% (1043) were unable to communicate with their doctor.

Notably, 22.9% of patients were involved in activities that could increase risk of COVID-19 infection, which included visiting a healthcare facility where COVID-19 was being managed (13.4%), having close contact with someone with either diagnosed or probable COVID-19 (4.3%), and traveling to an area with an established higher prevalence of COVID-19 (4.0%).

While strengths of the study included the international scope and reach, in addition to the responses from over 9000 patients with rheumatic disease, the online survey aspect may limit generalizability to the general rheumatic disease population. Those with severe COVID-19 symptoms were likely underrepresented as they were not able to complete the survey. Accuracy of COVID-19 diagnosis was also unknown and may increase the risk of misclassification. Additionally, most participants were White and female, although investigators hypothesize this may be due in part to the higher prevalence of rheumatic disease in women, the propensity for women to participate in online studies, and structural racism coupled with the distrust of research in marginalized communities. Lastly, investigators lacked a control population involving people without rheumatic disease, so the findings may reflect changes that the general population faced, not necessarily patients with rheumatic disease.

“Further work should address the consequences of employment status changes for health- care access, medication affordability, mental health, and rheumatic disease activity,” investigators concluded. “With an improved understanding of COVID-19 and the existence of patient recommendations from professional organizations, future studies should address changes in behaviors, perceptions, and concerns in this population, including COVID-19 vaccination, COVID-19 sequelae, and the long-term effect of the pandemic on patient outcomes.”


Hausmann JS, Kennedy K, Simard JF, et al. 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 [published online ahead of print, 2021 Jul 22]. Lancet Rheumatol. 2021;10.1016/S2665-9913(21)00175-2. doi:10.1016/S2665-9913(21)00175-2