The high prevalence and incidence of systemic lupus erythematosus (SLE) in African-Americans have been well known for years. These rates have been quantified on a population level recently in two CDC-funded registries, the Georgia Lupus Registry (GLR) and the Michigan Lupus Epidemiology and Surveillance Program (MILES).1,2
SLE data for other minority populations have been limited in the past, but more recently the CDC funded three additional registries to determine rates in American Indian/Alaska Native (AI/AN), Hispanic, and Asian populations. The Indian Health Service (IHS) Lupus Registry included all AI/AN people receiving care at IHS or tribal facilities in three administrative regions — the Alaska, Phoenix, and Oklahoma City areas — in 2007–2009.
Data published in 2014 by Elizabeth Ferucci, MD, and co-authors demonstrated a high prevalence of SLE with an age-adjusted rate of 178 per 100,000.3 In AI/AN women, the prevalence was extremely high (271 per 100,000), which is comparable to African-American women, the group previously shown to have the highest prevalence of SLE in the U.S. In addition, the mean annual incidence of SLE from 2007–2009 was high, at 7.4 new cases per 100,000 person-years.
Data from the IHS registry suggested that some patients with a diagnosis of SLE are managed by primary care providers (PCPs). However, patients with SLE with the diagnosis documented by a specialist at least once in the medical record were more likely to have SLE criteria documented and recommended care processes performed.4 The high prevalence and incidence of SLE in AI/AN populations, in combination with suboptimal access to specialists, led to the goal of creating education specifically targeted to PCPs in IHS or tribal clinics.
The Lupus Initiative (TLI) was created by the ACR in 2009 to develop resources to address health disparities in lupus. The initial project began with a one-year grant and has continued to the present.
A major focus of TLI has been on education for non-specialists to increase their awareness of lupus. In 2013, TLI and Dr. Ferucci at the Alaska Native Tribal Health Consortium (ANTHC) initiated a partnership to develop an educational series focused on training PCPs in IHS and tribal health organizations in the three regions included in the IHS Lupus Registry. The series, known as LupusConnect, had the overarching goal to reduce disparities in lupus diagnosis and treatment in AI/AN populations.
In order to achieve this goal, an educational series was developed that could be delivered by video teleconference in order to reach rural providers distributed across vast geographic areas in Alaska and other IHS areas.
The project drew on the success of ANTHC’s LiverConnect program, established in 2011 to improve access to specialty care in liver disease for providers in rural Alaska. The format of LiverConnect is a live, interactive, online education program delivered once or twice monthly to a target audience of PCPs. Based on this model, LupusConnect provided lupus education for PCPs. Continuing education credit (medical and nursing) was provided for attendance. Participants were encouraged but not required to submit cases or questions prior to the presentations. Learner participation was also encouraged through polls and other interactive educational tools.
There have been 14 LupusConnect presentations since 2013. These have included general topics such as diagnosis of lupus, medications for management of lupus, and health disparities in addition to more specific topic areas such as pregnancy, immunizations, pulmonary disease, and other comorbidities or complications of SLE. These have been presented by Dr. Ferucci and other relevant content experts.
In the first year of LupusConnect, 10 programs drew 150 participants from several regions of Alaska and Oklahoma. In the second year, regional programs were developed, with one presented at Phoenix Indian Medical Center and broadcast to outlying clinics, and another delivered online to several regions of Oklahoma. Evaluations were completed for each individual session and for the program overall. The sessions were generally rated highly, with average ratings of 4.5–5 on a 5-point Likert scale for meeting objectives, instructor effectiveness, and overall effectiveness of the session. In the overall program evaluations, 100 percent agreed or strongly agreed that the series met their expectations and learning needs and that it was valuable. Providers noted several changes they expected to make in their practice, including a better understanding of what labs to order and an increased awareness of medications and lupus manifestations.
TLI recently received a grant from the Office of Minority Health for the current year to focus on providing education to frontline providers in rural and micropolitan areas with limited access to rheumatologists, as well as implementing community-level lupus awareness programs in these regions. The focus will be on providing lupus education to African-American and AI/AN communities in areas considered the most difficult to reach and train primary providers in these regions to manage lupus or co-manage with a geographically distant specialist.
TLI is leading this project with many partners, including Karen Law, MD, and Sam Lim, MD, MPH, at Emory University. ANTHC will continue to partner with TLI to focus on education for providers caring for AI/AN patients, targeting the Northwest Portland Area, an area not included in the IHS Lupus Registry and not targeted by the previous LupusConnect series.
- Lim SS, Bayakly AR, Helmick CG, et al. The incidence and prevalence of systemic lupus erythematosus, 2002–2004: The Georgia Lupus Registry. Arthritis Rheumatol 2014;66:357–68.
- Somers EC, Marder W, Cagnoli P, et al. Population-based incidence and prevalence of systemic lupus erythematosus: the Michigan Lupus Epidemiology and Surveillance program. Arthritis Rheumatol 2014;66:369–78.
- Ferucci ED, Johnston JM, Gaddy JR, et al. Prevalence and incidence of systemic lupus erythematosus in a population-based registry of American Indian and Alaska Native people, 2007–2009. Arthritis Rheumatol 2014;66:2494–502.
- McDougall J Jr, Helmick CG, Lim SS, et al. Impact of provider specialty on the diagnosis and management of systemic lupus erythematosus in the American Indian/Alaska Native population. American College of Rheumatology Annual Meeting. Boston, MA: Arthritis & Rheumatology; 2014 [abstract].