LFA Studies Reveal Disparities in Care of Minority Patients and the Role of PCP’s in Care Management

In two first of their kind research studies, the Lupus Foundation of America (LFA) has identified needs in lupus provider education and care practices for minority patients. Referral and disease management practices vary by the type of doctor a patient with lupus symptoms presents to, and the patient experience differs between African American, Latino and Asian groups. This research will be presented this week at the American College of Rheumatology (ACR) Annual Scientific Meeting in Chicago.

In the first study, Lupus Primary Care Management Practices, data found that the majority of primary care physicians (PCPs) manage their lupus patients on their own but seek consultation from a specialist or expert when handling a complex case.

In terms of management preference among physicians of all experience levels, 60 percent of PCPs prefer to manage either all or most of their patients presenting with lupus symptoms, with almost 10 percent managing all their lupus patients on their own. 40 percent of PCPs prefer to refer out to a lupus specialist. In contrast, the majority of pediatricians and OB/GYNs prefer to refer out their lupus patients.

When PCPs with minimal or no experience with lupus were asked to identify actions they would take during an appointment with a patient presenting with lupus symptoms, 86 percent of this group reported that they would order bloodwork first, followed by asking a patient to track symptoms and follow up, directly treating the symptoms, or referring to a specialist. These analyses highlight the low tendency of PCPs to provide referrals for patients with potential lupus symptoms. Exploring whether this practice exists among other PCPs and if they experience barriers in referring to specialists will be an important next step of this study.

“Rheumatologists, who specialize in treating people with lupus, aren’t usually the first place that individuals go to seek care – they go to their primary care provider,” said R. Paola Daly, Director of Research at the Lupus Foundation of America. “This research highlights the significant role primary care providers play in the diagnosis process and provides an opportunity to further explore the barriers – both educational and practice based – that they face in assisting with lupus diagnosis.”

A second study, Variations and Disparities in Healthcare Teams among Individuals with Lupus, looked at the composition of healthcare teams treating individuals with lupus across demographic variables.

Economic and geographic factors are also related to having a PCP as the primary treatment provider, most likely due to limited access to specialists. Rural respondents and those with public insurance are about twice as likely to have a PCP in charge of their lupus care. This shows a potential need for increasing access for patients in rural areas or on public insurance.

African American, Asian and Latino individuals, who have higher rates of lupus, were more likely to be receiving primary treatment from a specialist than Caucasians. African Americans were more likely to have their specialist be a rheumatologist while Asians were more than eight times more likely to have a nephrologist. However, all groups were less likely to have a PCP on their treatment team. Given the complexity of the disease, management from both specialty and primary care is essential.

“Disparities among minority groups are occurring when a PCP is not on an individual’s lupus care team,” said Leticia Ocaña, National Health Educator at the Lupus Foundation of America. “People with lupus in rural areas and those with public insurance also see disparities in accessing specialty care. Further exploration into these areas is critical to ensure an appropriate and holistic approach to managing lupus care across all communities.”

Data from the first study was collected from an online survey administered to 910 physicians in September 2016 using a provider list from the Lupus Foundation of America and a commercial web panel of physicians. Data from the second study was gathered from the Foundation’s national lupus needs survey conducted between December 2015 and January 2016 among 3,022 adults who self-reported a lupus diagnosis.

The Lupus Foundation of America will present their findings from the two studies during poster sessions at the ACR Meeting. The first study, Lupus Primary Care Management Practices, will be presented on October 23 from 9:00 – 11:00 am, and the second study, Variations and Disparities in Healthcare Teams Among Individuals with Lupus, will be presented on October 21 from 9:00 – 11:00am. The LFA will also tweet about the findings from their research studies, as well as other important breaking announcements coming out of the world’s premier rheumatology conference. More than 50 Lupus Foundation of America funded researchers will be presenting on findings from their lupus studies. To stay connected with the LFA and receive the latest research news, visit our Twitter feed.