Two separate studies from the Lupus Foundation of America (LFA) analyzed the role certain caretakers play in the treatment of lupus patients as well as racial disparities some patients face.
The first study, “Variations and Disparities in Healthcare Teams Among Individuals with Lupus,” was a cross-sectional study of 3,022 adults who self-reported a lupus diagnosis. Most lupus patients said a rheumatologist was primarily treating their lupus (78.6%); 12.9% said their primary lupus doctor was a primary care physician (PCP), and 3.3% named a nephrologist. Factors associated with a rheumatologist as a patient’s primary lupus caregiver included black race, female sex, and presence of moderate to severe symptoms. Patients with life-threatening symptoms, who had public insurance, and who were younger than 65 years of age were more likely to have a PCP on their treatment team. Black and Asian respondents were much less likely to have a PCP on their treatment team.
We don’t have to tell you – getting a #lupus diagnosis is challenging. We shared some insights about how primary care providers diagnose lupus at #ACR18 today. https://t.co/Z6bujW6fWU pic.twitter.com/LHFvafbFrj
— Lupus Foundation of America (@LupusOrg) October 23, 2018
A diverse treatment team is necessary to manage the complex disease, according to Leticia Ocaña, LFA’s national health educator.
“Disparities among minority groups are occurring when a PCP is not on an individual’s lupus care team,” Ocaña said. “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.”
Who is part of your lupus health care team? Our research shows that there are disparities among communities when it comes to including specialists in your lupus care team. We’re discussing this now at #ACR18. pic.twitter.com/i7KoAQgFmi
— Lupus Foundation of America (@LupusOrg) October 21, 2018
The second study, “Lupus Primary Care Management Practices,” focused on information from 910 physicians (excluding rheumatologists). Management practices varied widely across different provider types. PCPs were more likely to manage lupus patients on their own before referring them to a specialist than pediatricians and OB/GYNs. When providers with no lupus experience were asked the earliest actions they would take during an appointment with a patient who presented lupus symptoms, 86.2% of PCPs (n = 119) said they would order bloodwork, a higher percentage than other provider types. The next most common initial action for PCPs would be asking patients to track symptoms and follow up. Only 13.8% of PCPs said they would first refer their patients to a specialist.
Two of our research studies presented this week at #ACR18 show that there are disparities among communities when it comes to including specialists in lupus care teams and how primary care providers diagnose lupus. Learn more about these studies: https://t.co/byNf1VMTGB
— LFA Pacific NW (@lupuspnw) October 23, 2018
“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, LFA’s director of research. “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.”
Clinical year in review (3): Mortality in #lupus improving but still increased compared to general population, race/gender disparities persist, canakimumab improved outcomes in high-risk CAD, checkpoint inhibitors and new/worsening #autoimmunedisease #ACR18
— Angelo Gaffo (@ALGaffoRheumMD) October 21, 2018
Both studies were presented at the 2018 American College of Rheumatology conference.