COVID-19 pandemic reduced access to optimal lupus care, providers report
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Health care professionals around the world are reporting that the COVID-19 pandemic has prevented patients with systemic lupus erythematosus from receiving optimal care, resulting in increased risk for organ damage, according to a survey.
Published by GlaxoSmithKline, the survey found that 44% of health care professionals, representing seven countries, agreed that the pandemic has placed barriers in the way of care for patients with SLE over the past 2 years.
“The survey results highlight that, as we emerge from the pandemic, there are critical opportunities to drive proactive conversations about organ damage risk and how to align the short and long-term treatment goals,” Roger A. Levy, MD, global medical expert of immunology and specialty medicine at GlaxoSmithKline, said in the release. “We are committed to ongoing research and scientific exchange on a proactive approach to lupus care.”
The survey was conducted from July to September and included 648 health care professionals from Canada, China, France, Germany, Japan, Spain and the United States. The researchers intended to assess the attitudes and practices of health care professionals regarding the treatment of patients with SLE and lupus nephritis. Included providers were board-certified rheumatologists, nephrologists or internists. To be included in the survey, providers in the United States were required to manage at least 15 patients with SLE, while those in Canada, China, Germany and Spain were required to care for at least 10 patients with SLE, and providers in Japan were required to care for five.
In all, 78% of those surveyed expressed interest in data that contextualized the benefits of varying therapies in patients at risk for organ damage. Additionally, 72% of those surveyed expressed confidence in the current standard of care for minimizing organ damage, while 79% agreed that “a lack of disease-modifying therapies” makes lupus a difficult disease to treat.
Specifically, providers in the United States expressed concern regarding the impact of COVID-19 on SLE care. Approximately 60% of U.S. providers said that “some” of their patients with SLE did not schedule visits for fear of contracting COVID-19. Meanwhile, 50% of those providers “suspect” some other factors might have prevented these patients from receiving adequate care.
Finally, 24% of surveyed providers say that their patients are experiencing more SLE flares compared with the pre-pandemic period.
Regarding the potential for organ damage, 46% of surveyed providers expressed that they only discuss the possibility with patients after they present with SLE symptoms, while 65% of respondents reported waiting longer than 1 year following diagnosis to broach the subject. Approximately 42% reported disclosing the possibility of organ damage, even when there are no present symptoms.
“The fact that providers know that this is a severe disease which can cause permanent, irreversible damage, but not quite being comfortable enough to discuss this upfront with their patients was probably the big take-home message for patients,” Rajeev Raghavan, MD, FASN, a nephrologist and clinical professor of medicine at the University of Houston Tilman Fertitta Family College of Medicine, and adjunct associate professor at Baylor College of Medicine, told Healio. “I think the delay could lead to damage without patients knowing what to look for.”
According to Raghavhan, a lack of patient education and resources could lead to patients failing to grasp the gravity of the situation surrounding a diagnosis of SLE or lupus nephritis.
“Not knowing that may mean that the patient does not go to frequent appointments or lab checks,” Raghavhan said, noting patients missing appointments and scheduled lab work is a problem that was only amplified by the COVID-19 pandemic. “I think not having that education and awareness about what can happen can have some serious complications.”
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