New research led by Mayo Clinic shows that more people are being diagnosed with lupus than in the past, while risks of severity and death remain the same. The study is published in BMJ Annals of the Rheumatologic Diseases.

Lupus is a chronic autoimmune disorder that causes inflammation and pain throughout the body. Most common in women (9 of 10 diagnosed cases); it attacks both joints and organs – including the skin.

"In our study, we confirmed that in more than 40 years, overall survival among patients with lupus did not improve. Neither was there any apparent improvement in disease severity," says Ali Duarte Garcia, M.D., a rheumatologist and health services researcher at Mayo Clinic and the study's first author. "Unfortunately, it also seems that more people are being diagnosed with lupus, at least in our community."

Lupus has no cure and contributes to an earlier death. However, the cause of lupus continues to evade clinical researchers.

"Our study suggests that the increase in the incidence of lupus is associated with an increase in the racial and ethnic diversity in the community," continues Dr. Duarte Garcia. "However, the research community has yet to determine why non-white, non-Hispanic individuals seem to be at higher risk of lupus."

"As for there being no improvement in the severity of disease or risk of death," he says, "There were many years without any advancement in available treatments."

"In the last few years, several new medications have been approved by the Food and Drug Administration," continues Dr. Duarte Garcia. "Over time, we hope to see improvements in survival, as well as symptom alleviation."

Studying the community

The researchers examined community health data from 1976–2018, collected in the Rochester Epidemiology Project, also called 'the REP.' This unique medical records linkage system and research collaborative is centered in Rochester, Olmsted County, Minn. Nearly six decades long, the collaboration now spans communities in 27 nearby counties in southern Minnesota and western Wisconsin.

"The REP allows us to passively study patients using information in their medical records," says Cynthia Crowson, Ph.D., a biomedical and statistical scientist specializing in rheumatology and the study's senior author.

"This approach provides a population-based cohort that is more complete than other approaches," she continues. "We avoid any participation bias that can occur when people are asked to participate in a prospective study. Furthermore, we avoid any recall bias that can occur when people are asked to provide information about things that occurred in the past."

"Epidemiologic studies are foundational," states Dr. Duarte Garcia. "They tell us the frequency of a disease and also inform how the disease impacts people's lives and factors associated with the disease."

"Knowing the frequency of a disease and who it affects informs health care policy and practice," he says. "This information is essential for agencies which decide how to allocate clinical and research resources for the treatment and study of a disease."

In the current study, from 1976 through 2018, the investigators identified 188 patients with newly diagnosed systemic lupus erythematosus in Olmsted County. They observed a decline in the percentage of women diagnosed over the study period, from 93% to 78%. They also noted a substantial jump in diagnoses among non-white, non-Hispanic people in the last 10 years of the study period, from essentially zero in the 1970s to about 30% of all cases.

The researchers already knew that lupus was more common in women than men and more common in women of color. Their new findings provide more information about the current state of lupus. As their research continues, they hope to shed light on the reasons behind these disparities.

"There could be environmental or genetic factors that will become evident over time as we observe our community," says Dr. Duarte Garcia. "We also expect that providers everywhere will continue to see rising incidence as diversity increases across the country."

All the more reason to pursue this research.

Illuminating science

"Existing knowledge about lupus is biased toward the severe end of the disease spectrum because of difficulty assembling population-based cohorts," says Dr. Crowson. "It’s important to study the full spectrum of patients with lupus to have the best information and treatment strategies available for newly-diagnosed patients."

Dr. Crowson has provided analytics expertise and perspective for a lengthy list of research collaborations at Mayo Clinic. She leads a long-term federally funded project examining multimorbidity in rheumatoid arthritis. And most recently, she partnered with Dr. Duarte Garcia to establish a new long-term research initiative, the Lupus Midwest Network, or LUMEN. This latest publication stems from their work in LUMEN.

"LUMEN is an acronym for Lupus Midwest Network, and it’s a reference to light," says Dr. Duarte Garcia. "We hope our study will shine a light that leads to a better understanding of lupus."

Dr. Crowson grins and explains, "We use a lightbulb in our publications, literally writing 'Lupus Midwest Network, LUMEN,' followed by a graphic of a lit bulb for illumination." LUMEN is supported through lupus research-designated funding from the Centers for Disease Control and Prevention (Grant U01 DP006491).

Dr. Duarte Garcia is a recent alumnus of the Kern Health Care Delivery Scholar Program, under which he received mentored training and research support for several years. Through the support from the Mayo Clinic Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery, he has focused on "multimorbidity and lupus, specifically the impact of multiple chronic conditions on patient outcomes."

With their multidisciplinary research team in the LUMEN initiative, Drs. Duarte Garcia and Crowson are studying the path people take from the first onset of lupus symptoms to reaching a diagnosis of lupus. Read more about lupus research at Mayo Clinic and the launch of LUMEN.

"In some cases, this journey takes years," says Dr. Crowson. "We hope to find insights that will help identify lupus earlier to help people find the answers they need more quickly.

"We are also studying the health care that patients with lupus receive," she says. "Receiving vaccinations and regular preventive screenings like mammograms and blood pressure checks could help them live longer."

In addition to Drs. Crowson and Duarte Garcia, the research team included these Mayo colleagues:

• Jesse Dabit, M.D., a Rheumatology fellow.
• Stephanie Duong, a biostatistician and statistical programmer.
• Rachel Giblon, a biostatistician.
• Mehmet Hocaoglu, M.D., a former Rheumatology research trainee and currently an internal medicine resident at the University of Maryland Medical Center Midtown Campus, Baltimore.
• Hannah Langenfeld, a statistical programmer.
• Shirley-Ann Osei Onomah, a clinical research coordinator.
• Alain Sanchez Rodriguez, M.B.B.S., a Rheumatology research fellow.
• Maria Valenzuela Almada, M.B.B.S., a former Rheumatology research fellow and currently a pediatrics resident at Children’s National Hospital, Washington, D.C.

Also collaborating were Graciela Alarcón, M.D., emeritus faculty at the University of Alabama at Birmingham; and Chad Helmick, M.D., an epidemiologist at the Centers for Disease Control and Prevention, Atlanta.

Review a related peer-reviewed journal article: Population-based incidence and time to classification of systemic lupus erythematosus by three different classification criteria: a Lupus Midwest Network (LUMEN) study.

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