Race, ethnicity and education levels linked to delays accessing lupus specialty care
Lupus patients who are African-American or Asian, or those who have attained only a high school education or less, had longer delays in seeing a rheumatologist or nephrologist for a confirmed diagnosis than other groups, according to new research findings presented this week at the 2016 ACR/ARHP Annual Meeting in Washington.
Systemic lupus erythematosus (SLE) is a chronic disease that causes inflammation that affects the skin, joints, kidneys and other organs. Lupus occurs 10 times more often in women than men, and also may have a higher prevalence among some ethnic groups. It's a complex disease that requires treatment by a specialist such as a rheumatologist or nephrologist.
Researchers at the California Pacific Medical Center and UCSF in San Francisco analyzed data from the California Lupus Epidemiology Study (CLUES) to explore disparities in outcomes among lupus patients from racial and ethnic minorities, as well as individuals with lower education or socioeconomic status, compared to other lupus patients. One focus of the study was time of delay to see a specialist.
"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, a resident at California Pacific Medical Center in San Francisco, and a lead author of the study. "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."
The study looked at 196 lupus patients with a mean age of 45 years. Of these, 13 percent had a high school education or less, 34 percent had limited health literacy, and 13 percent were below 125 percent of the U.S. federal poverty level. Thirty percent of the patients were Caucasian, 22 percent were Hispanic, 14 percent were African-American and 33 percent were Asian.
Overall, delays between onset of lupus symptoms and disease diagnosis were common, with 32 percent of patients waiting over 1 year to receive a diagnosis. This finding did not differ significantly for any patient group. Of the 43 percent of patients who were initially diagnosed by a physician other than a rheumatologist or nephrologist, 24 percent experienced a delay in referral to a specialist of more than three months. In addition, while 92 percent of Caucasians and 85 percent of Hispanics saw a specialist within three months, only 64 percent of African-Americans and 66 percent of Asians did. Of those with a high school education or less, only 45 percent were referred to a specialist within three months compared to 81 percent of patients with a higher level of education.
Disparities in the time from diagnosis to access to specialty care to treat and manage patients' lupus are significant, the study's authors said. African-Americans, Asians, and those with a high school education or less are most at risk for these potentially detrimental delays in care.
"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," said Dr. Gaynon.