Approximately 27% of patients with a rheumatic disease experienced a change in employment status during the early months of the COVID-19 pandemic, according to survey results published in The Lancet Rheumatology.

“People with rheumatic disease are at increased risk of infection due to immune dysregulation and the use of immunosuppressive medications,” Jonathan S. Hausmann, MD, of Beth Israel Deaconess Medical Center, in Boston, and colleagues wrote. “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.”

“These challenges also greatly affected employment and education, and consequently, access to health insurance and the ability to obtain health care,” they added. “Understanding the effect of the pandemic on people with rheumatic disease might help rheumatologists better address their patients’ needs and inform policies to protect this potentially vulnerable population.”

To examine how the COVID-19 pandemic has affected patients with rheumatic disease across the world, Hausmann and colleagues, in partnership with the American College of Rheumatology and its COVID-19 Global Rheumatology Alliance, created a survey. Developed through the help of key stakeholder groups, the COVID-19 Global Rheumatology Alliance Survey was administered to adults with inflammatory or autoimmune rheumatic diseases around the world through social media, websites and patient support organizations.

Jonathan S. Hausmann

Questions covered demographics, rheumatic diagnosis, COVID-19 diagnosis, adoption of protective behaviors against coronavirus infection, medication access and changes, health care access and communication with rheumatologists, and changes in employment or schooling status. A total of 12,117 participants responded to the survey between April 3, 2020, and May 8, 2020. Among these respondents, 10,407 included the appropriate age data. The researchers included data from participants with and without COVID-19, but excluded those who reported only noninflammatory rheumatic diseases.

In all, the researchers included complete responses from 9,300 respondents in their analysis, of whom 90.1% were women, 9.6% were men and 0.3% were nonbinary. In addition, 67.5% of the included participants reported they were white, while 16.8% identified as Latin American, 2.1% were Black, 2% were Asian and 0.5% were Native American, Aboriginal or First Nation. The most common rheumatic diagnoses were rheumatoid arthritis, with 39.1%; systematic lupus erythematosus, at 31%; and Sjögren’s syndrome, at 13.9%.

According to the researchers, 82% of the included respondents had continued their antirheumatic medications as prescribed, while 99.7% reported they had been following the suggested protective behaviors to prevent or limit COVID-19 spread. A total of 2,524 respondents, or 27.1%, reported a change in employment status. In all, the number of respondents who reported working full time decreased 13.6%, from 4,066 to 3,514.

“Understanding the early behaviors 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,” Hausmann and colleagues wrote. “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. Unique within the field of rheumatology, our study illustrates the direction and magnitude of employment change from Jan 1, 2020, to May 8, 2020.”

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

PERSPECTIVE

 

Carolyn Zic, MSN, FNP-BC

As the COVID-19 pandemic continues, research emerges on the effects of the physical and emotional health and financial impact of individuals worldwide. The pandemic has shaped the way people interact with one another and this includes the way people prioritize and receive health care services.

This study highlights the behaviors worldwide of patients with rheumatic diseases and how that has changed during the pandemic. The researchers illustrate the importance of the health professional in identifying barriers to care, such as the loss of insurance coverage due to job loss/changes, as well as having conversations about patient perceptions and attitudes toward their medication regimen. Asking questions pertaining to how the pandemic has affected their lives personally as well as professionally can encourage conversations that may identify areas for intervention to improve overall health.

The study also indicated that many patients adopted what is described as “protective behaviors,” such as social distancing and masking. These positive behaviors can be encouraged, and health care providers can provide patients with the necessary resources that give them the most current up-to-date information in a time where things are rapidly changing. We can also provide reassurance or changes if needed to treatment regimens in order to optimize adherence and preventing disease flares.

Patients who are immunosuppressed may also need help from their health care team in the way of documentation for schools and places of employment to ensure that they have accommodations in place to help keep them safe from infection. As the patients and families that we care for continue to adapt to how their lives have been changed during this pandemic, health care professionals are in a prime position to engage in shared decision-making with our patients as a way to support them and optimize their health.

Carolyn Zic, MSN, FNP-BC

Nurse practitioner, Pediatric rheumatology

University of Chicago

Comer Children’s Hospital

Board member, Rheumatology Nurses Society

Advisory board member, Mallinckrodt Pharmaceuticals