Epidemiology of Lupus: Longitudinal Studies in Population-Based Cohorts - 2022

PROJECT SUMMARY Knowledge about lupus is biased towards the severe end of the disease spectrum due to difficulty assembling population-based cohorts of persons with lupus. An urgent need to expand the basic epidemiologic understanding of cutaneous and systemic lupus in four content areas (i.e., natural history, treatment, health care access, and disparities) was identified by the Centers for Disease Control and Prevention. Our project addresses these needs using the unique research infrastructure of the Rochester Epidemiology Project (REP), which contains longitudinal data on residents of a 27-county region in Minnesota and Wisconsin. We have assembled population-based cohorts comprised of persons with prevalent and incidence systemic lupus erythematosus (SLE) and cutaneous lupus erythematosus (CLE) matched to general population comparators without SLE/CLE by sex, age, race/ethnicity, and county of residence. These cohorts comprise the Lupus Midwest Network (LUMEN). Through the REP infrastructure, LUMEN follows individuals regardless of insurance status and encompasses the full spectrum of care, from primary care clinics to tertiary specialty care, and maintains an electronic index of diagnoses and procedures, including all inpatient and outpatient encounters, laboratory measures, and drug prescription data. In this competitive renewal of a highly successful grant investigating multimorbidity in SLE and CLE, opioid pain therapy, and healthcare access and gaps, our team of researchers and clinicians with decades of experience conducting population-based research will now focus on new research questions designed to have a high public health impact and to leap forward in our understanding of the natural history, treatment, healthcare access, and disparities across the full spectrum of CLE and SLE. Using the LUMEN population-based cohorts, we aim to 1) determine the contributions of lupus nephritis (LN) and anti-phospholipid syndrome (APS) to the excess mortality and unplanned healthcare utilization (i.e., emergency department visits and hospitalizations) among patients with SLE; 2) determine the contribution of LN to the excess risk of cardiovascular disease (myocardial infarction and stroke), infections, and osteoporosis among patients with SLE; 3) determine access to SLE-specific screening services and patterns of glucocorticoid use by social determinants of health, age, sex, and race/ethnicity; and 4) determine the transition rates over time and risk factors for transition from CLE to SLE over four decades to test the hypothesis that a) most transitions from CLE to SLE occur within five years of the CLE diagnosis, and b) oral contraceptives or postmenopausal hormone use increase the risk of transitioning from CLE to SLE. These projects will inform the individualized prognostication of SLE in clearly defined disease phenotypes and inform interventions to optimize patient care, prevent or reduce adverse outcomes in patients with lupus, and will identify a window of opportunity in CLE for therapeutic interventions to prevent the transition to SLE.