Investigating Retention in Care to Address Healthcare Disparities in Lupus: A Wisconsin Lupus Cohort

Constructing future systemic lupus erythematosus care continuum interventions to improve SLE health equity could focus on disadvantaged neighborhoods, and design programs specifically for the vulnerable populations residing within these neighborhoods. Ultimately, we aim to use the care continuum measures to design evidence-based care strategies and policies to reduce health disparities and advance health equity among patients with lupus.

At a Glance

Lupus — an autoimmune disease that causes inflammation and organ damage — disproportionately affects patients of color and those of low socioeconomic status, who also experience higher rates of associated kidney disease and early death. Ensuring that patients get regular care could help keep symptoms in check, but retention predictors in lupus care are poorly understood.

This study defined retention in care for different demographic groups in Wisconsin, finding that those from the most disadvantaged neighborhoods were the most at-risk of ~60% lower retention in care. The insights generated from this research have the potential to help providers reduce lupus outcome disparities in the future.

The Challenge

Lupus, or systemic lupus erythematosus (SLE) is an autoimmune disease that disproportionately affects patients of color and socio-economically disadvantaged patients who experience greater SLE kidney disease and early mortality. Despite effective lupus monitoring strategies and treatments, significant healthcare disparities and outcome gaps remain. Black women are seven times more likely to develop renal failure than white women, and twice as likely to die prematurely. SLE is also a leading chronic disease cause of death in women ages 18-25 and ranks in the top 10 for all women of color under age 80.

Because of this, SLE is an important target for disparities research. Research to understand and promote retention in care has been effective for HIV, but relatively little work has been done on SLE. Therefore, this research helps address an unmet need to identify and assist SLE patients at risk for gaps in care and outcome disparities.

Project Goals

The overarching goal of the project was to examine predictors of lupus retention in care to develop a lupus care continuum and inform interventions to reduce disparities.

Aim 1: The first aim of the project was to clinically validate and describe a diverse cohort of patients with lupus. The researchers constructed a tool with detailed classification criteria for identifying lupus patients, secured a list of 528 potential lupus patients, and validated that 397 met the criteria for the study.

Aim 2: The project’s second objective was to measure and examine predictors of retention in care among patients with lupus. After compiling the above validation, the researchers worked with data analytics programmers from the Medical College of Wisconsin (MCW) to secure clinical, demographic, and laboratory data to construct retention in care and control variables. Visit and lab-based definitions of retention in care for HIV from the World Health Organization and the Centers for Disease Control were used as models.

Results

In total, 397 individuals met the criteria for SLE. Within this group, most were female (91 percent) and 56 percent were White, 40 percent Black, and 5 percent Hispanic. Overall, 5 percent of White patients and 51 percent of Black patients resided in the most disadvantaged neighborhood quartile, a factor of 10 difference. Sixty percent of SLE patients met visit-defined and 27 percent met lab-defined retention in care. In those with SLE nephritis, visit and lab retention were just 66 percent and 34 percent, and only 14 percent met the ACR recommended four annual tests in nephritis. Individuals residing in the most disadvantaged neighborhood quartile were 59 percent less likely to have at least two clinic visits annually.

Statistical differences for retention in care based on age, gender or race were not seen in either model. The degree of neighborhood disadvantage was calculated by using the Area Deprivation Index (ADI). Residence in the most disadvantaged neighborhoods was the strongest predictor of poor retention in care. Never smoking was also a predictor for visit-defined retention, while greater SLE severity by number of criteria predicted better lab-defined retention

Lasting Impact

Defining retention in lupus care is a critical step toward identifying and assisting SLE patients at risk for gaps in care and outcome disparities. Race did not seem to predict retention; however, the most disadvantaged neighborhoods were a strong predictor of poor retention in care. Future interventions could identify such at-risk populations and explore approaches such as multi-disciplinary care outreach models to reduce care disparities.

Study findings have been shared locally and nationally with strong support. In January 2019, findings were shared in Milwaukee, Wisconsin at the Medical College of Wisconsin (MCW) grand rounds, and the findings have informed plans by MCW Rheumatology to create a lupus clinic in a high need area. Researchers were invited for a national American College of Rheumatology podium presentation, a grant submission, and other potential collaborations aiming to improve outcomes and health equity in SLE care.