The 982-patient cohort used for both studies was recruited mostly from non-clinical sources—Web sites, newsletters, and lupus support groups—making it much more diverse than if patients were sampled only from academic research centers, says co-author Jinoos Yazdany, MD, MPH, adjunct assistant professor of medicine at the University of California, San Francisco (UCSF). Researchers telephoned each patient to ask detailed questions about their disease history and socioeconomic background—including ethnicity, educational level, income, and medical insurance. The patients were all English speakers and came from 41 different states.
For the first study, researchers focused on how many times patients had seen a rheumatology specialist in the previous year. Patients 65 or older were significantly less likely than younger patients to have seen a specialist at least once (65%, compared to 79% of patients younger than 65); similarly, men were less likely than women to have reported at least one visit (63% versus 79%); as were patients with a household income less than $40,000 (72%, compared to 81% of patients with incomes higher than $40,000).
The seeds of the second study arose at the bedside. While working at the lupus clinic at UCSF, Dr. Yazdany noticed that many of her Medicaid patients were traveling extremely long distances for care. “Some traveled six hours and even had to stay overnight in San Francisco,” she recalls. The patients weren’t making the trek because they wanted to be treated at an academic center, but because rheumatologists closer to home didn’t accept Medicaid. Indeed, the same telephone survey found that patients with only Medicaid insurance traveled an average of 42 miles for care, while patients with private insurance traveled about 24 miles.
These results are especially worrisome if the extra distance means poorer treatment outcomes. “You can imagine that if a patient is traveling six hours in order to see their rheumatologist, if they get sick and don’t have somebody to drive them, they’re not going to make the trip,” she says. “They’ll either have to get care in emergency departments or not get care at all.”
Dr. Yazdany attributes these demographic and socioeconomic disparities to two major factors: physician awareness and flaws in the U.S. healthcare system. “If the patient’s generalist physician doesn’t have a good understanding of lupus, they may not make a timely and appropriate referral to a specialist,” she says. Moreover, in the last few years, because Medicaid physician reimbursements have dropped significantly, many rheumatologists in private practice say they can no longer afford to accept Medicaid patients. “That’s an example of a national policy that’s directly influencing who’s receiving care,” she laments.