How Dr. Christine Anastasiou used Healthcare Cost and Utilization Project (HCUP) data to highlight mortality disparities among hospitalized lupus patients

COVID-19 offered stark proof of how much we still have to learn about the immune system. COVID-19-triggered cytokine storms that, in severe cases, caused patients’ immune systems to attack healthy tissues and organs, are reminiscent of how autoimmune diseases cause immune systems to mount responses against the body’s healthy organs and tissues. Unlike COVID, there are no vaccines or cures for autoimmune diseases. The focus is on treatment to maximize quality of life.

“My priority as a doctor has always been to get people back to focusing on what brings them joy and satisfaction,” Rheumatologist Christine Anastasiou, MD explains. She recalls the first patient she ever diagnosed with the autoimmune disease, rheumatoid arthritis (RA). When profound joint pain and fatigue made it impossible for the young patient to work, her friends called her lazy.” Dr. Anastasiou notes, “By treating her disease, we helped her regain her independence and quality of life.”

While it may sound relatively straightforward, rheumatology is a uniquely challenging specialty because it addresses every organ system. Take for example systemic lupus erythematosus (SLE), a primary focus of Dr. Anastasiou’s research and clinical practice. Notoriously difficult to diagnose due to varied presentations and contributing factors (both genetic and environmental), SLE can flare, causing the immune system to attack the joints, skin, kidneys, blood cells, or brain.

Like COVID, the burden of SLE is disproportionately borne by people of color. SLE is 2 to 3 times more prevalent in Black, Asian, and Latinx populations, according to the Centers for Disease Control and Prevention (CDC). The CDC estimates that women of childbearing age (ages 15 to 44) are between 4 and 12 times more likely than men to develop the disease. The barriers to testing and treatment highlighted during the pandemic help explain why people of color with SLE have, and continue to suffer more severe outcomes.

In 2020, Dr. Anastasiou and colleagues from UCSF and the San Francisco VA Medical Center published their findings from the largest study of mortality among hospitalized SLE patients performed to date. They analyzed the risk of death among hospitalized patients with SLE between 2006 and 2016 using data from the Healthcare Cost and Utilization Project (HCUP) National Inpatient Sample (NIS); data accessed through UCSF’s Clinical and Translational Science Institute (CTSI) consultation services.

Their analysis showed that while hospital mortality rates for all SLE patients improved between 2006 and 2008 before plateauing, hospitalized SLE patients who are Black, African American, Latinx, and Asian/Pacific Islander still have higher mortality rates than hospitalized SLE patients who are White. Hospitalized Black, African American, Latinx, and Asian/Pacific Islander SLE patients were also more likely to die than hospitalized patients of the same races/ethnicities who did not have SLE.

When discussing these findings, Dr. Anastasiou stresses, “We need to narrow these disparities and focus on the things we can intervene upon, like access to care and any inequities in treatment,” emphasizing that the process must start with making research more diverse. Case in point, theirs was the first large-scale population-based study in over 20 years to look at hospital deaths among Asian/Pacific Islander SLE patients.

“We also need to consider the environments people live in,” she adds, noting, “We suspect environmental factors may play a role in SLE development and flares. Social and economic factors can determine their access to treatment, and even their ability to take or complete that treatment.” Lastly, circling back to the importance of quality of life, she stresses the need to focus on reducing treatment burden: “Targeting the disease and eliminating symptoms with a minimum of long-term side-effects is the next goal.”

Dr. Anastasiou plans to continue skill building around clinical cohort development so autoimmune patients will have more opportunities to participate in research exploring potential new therapies. She’s optimistic, noting, “The future is very bright for autoimmune patients because we have a much better understanding of immunology.” Unraveling the mysteries of the immune system may be clos