More than three-quarters of patients with rheumatic diseases quarantined and kept social distance during the pandemic, according to a new global survey.
Patients with rheumatic disease adhered to public health guidance as the COVID-19 pandemic emerged, although a significant number also experienced changes in their employment status that may have affected their ability to access health care.
The authors noted that people with rheumatic conditions could face a higher risk of severe COVID-19 due to immune dysregulation and the use of immunosuppressive therapies. Such risk can be mitigated by behavioral changes, but the investigators noted that at the beginning of the pandemic, the virus was not well understood.
“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,” the authors wrote.
The investigators, representing institutions in North America, Europe, Australia, and New Zealand, developed the COVID-19 Global Rheumatology Alliance Patient Experience Survey in hopes of better understanding the decisions made by patients with rheumatic disease during the pandemic. The survey was conducted between April 3, 2020, and May 8, 2020. More than 12,000 people in 90 countries responded to the survey, and 9300 responses were used in the new analysis. The patients had a median age of 46.1 years, and 90.1% of respondents were female. Two-thirds of respondents (67.5%) were White, 16.8% were Latin American, 2.1% were Black, 2.0% were Asian, and 0.5% identified as Native American, Aboriginal, or First Nations. Most of the patients (39.1%) had a diagnosis of rheumatoid arthritis, followed by systemic lupus erythematosus (31.0%), and Sjögren syndrome (13.9%).
The surveys showed a number of trends and themes. Most patients (82.0%) said they continued taking their antirheumatic therapies during the pandemic.
“This practice conforms to current recommendations for people with rheumatic conditions during the pandemic, which were not yet available at the time of the survey,” noted the authors.
Meanwhile, virtually all of the patients (99.7%) said they took protective measures to limit possible exposure to the SARS-CoV-2 virus, which the authors noted may be due in part to the perception of higher risk due to their disease and medication. Whether they actually face higher risk is not yet clear.
“People with rheumatic diseases might be more likely to be tested for COVID-19 because of their underlying diagnoses, thus creating biases in the outcomes of many studies,” the investigators wrote. “Additionally, those with rheumatic disease might have increased prevalence of comorbidities such as chronic lung disease, a known risk factor for poor COVID-19 outcomes, which has been associated with increased risk of death among this patient population.”
The most common behavioral changes included staying at home as much as possible, physical distancing, and using gloves or masks. More than half of patients who reported quarantining said they did so as a result of governmental policies. Nearly 4 in 10 respondents (38.9%) said they engaged in all of the protective measures listed in the survey.
Aside from precautionary behavioral changes, the survey also found that one-quarter of respondents (27.1%) experienced a change in employment status, including a 13.6% drop in the number of people with full-time employment.
“The loss of employer-sponsored health insurance could be particularly catastrophic for those living in countries without universal health care, who might not be able to afford out-of-pocket medical costs,” the authors said, adding that remote-work opportunities might be particularly valuable for this patient population.
The investigators concluded that these data provide important background on the baseline instincts and actions taken by patients at a time when SARS-CoV-2 and its implications for patients with rheumatic diseases were poorly understood.
“With an improved understanding of COVID-19 and the existence of patient recommendations from professional organisations, future studies should address changes in behaviours, perceptions, and concerns in this population, including COVID-19 vaccination, COVID-19 sequelae, and the long-term effect of the pandemic on patient outcomes,” they wrote.
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. Lancet Rheumatol. Published online July 22, 2021. doi:10.1016/S2665-9913(21)00175-2