Blacks, Asians and Less Educated Often Face Delays in Lupus Diagnosis and Care in US
A person’s race and socioeconomic status in the U.S. can lead to delays both in diagnosing systemic lupus erythematosus (SLE) and the start of specialty care, according to findings presented at the recent American College of Rheumatology (ACR)/Association of Rheumatology Health Professionals (ARHP) Annual Meeting in Washington, D.C.
Researchers from the California Pacific Medical Center and University of California, San Francisco (UCSF) used information from the California Lupus Epidemiology Study (CLUES) to examine how the socioeconomic and ethnic backgrounds influence access to lupus specialty care.
Lupus patients should be monitored by a rheumatologist and, depending on the presence of secondary lupus nephritis, they should also be cared for by a nephrologist.
“Lupus is a complex disease requiring specialized treatment, and prompt referral to a specialist is integral in ensuring patients have the best possible outcomes” said Lisa Gaynon, MD, principal author of the study and a resident at California Pacific Medical Center in San Francisco, in a press release. “We were interested in identifying whether patients were experiencing significant delays to seeing a specialist and if so, which populations were at highest risk for delays.”
In total, 196 lupus patients (mean age of 45) were included, and information looked at participants’ level of education, health awareness, and where they stood in relation to U.S. federal poverty level, among other factors.
Researchers found that 13% of the participants had only a basic education (up to high school), 34% admitted to having a narrow knowledge of health-related issues, and 13% were below the 125% U.S. federal poverty level. The largest ethnic group in these patients was of Asian origin (33%), followed by Caucasians (30%), Hispanics (22%) and African-American (14%).
The first and, maybe, most disturbing study finding was significant delays between the first appearance of lupus symptoms and a lupus diagnosis. Among all ethnic and education groups, about 32% of these lupus patients went undiagnosed or misdiagnosed for more than a year.
African-American or Asian patients with SLE were less likely to be referred to a rheumatologist or nephrologist within three months after diagnosis, compared to whites and Hispanics — 64% and 66%, respectively, compared to 92% and 85%, the study found. A similar trend was observed in education levels, with 45% of SLE patients with a high school diploma being referred to a specialist within three months of diagnosis, compared to 81% of those with advanced degrees.
“These results identify populations who are at a significant disadvantage when it comes to accessing specialist care for their lupus. The next step in our research will be to look closer at which variables may be playing a role in these delays, for example, transportation, geographic distribution of specialists and health insurance, so we can start to develop targeted solutions to this problem,” Gaynon said.
SLE is a chronic, inflammation-mediated, autoimmune disease that shows symptoms in the skin, joints, kidneys and other organs. Women are 10 times more likely to develop lupus than men, regardless of ethnicity; in fact, women are more prone to autoimmune diseases in general. Genome-wide association studies have also linked specific ethnicities to a higher prevalence of SLE.
A delayed lupus diagnosis translates into delayed treatment, which can exacerbate symptoms.