A More Equitable Future in Lupus Care & Outcomes

Dubois Memorial Lecture

WASHINGTON, D.C.—Where you live, what you look like, and how much money you make—to name a few—all affect health outcomes. And as physicians, we want the best for our patients. So what can we do to make a difference?

Dr. Feldman

Candace Feldman, MD, MPH, ScD, assistant professor of medicine, Division of Rheumatology, Inflammation and Immunity, Brigham and Women’s Hospital and Harvard Medical School, Boston, has devoted her career to studying health inequities. At ACR Convergence 2024, she delivered the Dubois Memorial Lecture, Building a More Equitable Future in Lupus Care and Outcomes, where she passionately shared data on what is known, what has been tried and what else could be done moving forward to close the gap.

Health Inequities

Health inequities are “differences in health status, or in the distribution of health resources between different population groups, arising from the social conditions in which people are born, grow, live, work and age,” Dr. Feldman said, and, most importantly, “Health inequities are unfair, preventable and modifiable.” The last two words serve as motivation for her research and talk.

Health inequities come from differences in 1) the receipt of high-quality care and preventive care; 2) access to sustained healthcare, medications and research; 3) life conditions (e.g., opportunities, exposures, stressors, support); and 4) health-related behaviors. They are driven by societal structures that have been perpetuated over time through policies and by institutions.

“True or false?” Dr. Feldman asked the audience. “The estimated number of deaths in the United States attributable to social determinants of health (e.g., education access and quality, neighborhood, economic stability, etc.) is comparable to the number attributed to pathophysiological and behavioral causes.” The answer? True.

Several studies demonstrate both racialized and socioeconomic inequities in systemic lupus erythematosus (SLE).^1,2 Black, American Indian/Alaska Native and Hispanic/Latinx individuals have a higher incidence and prevalence of SLE and lupus nephritis (LN). These minoritized populations also see poorer SLE-related outcomes (e.g., mortality, end-stage renal disease). Individuals residing in lower socioeconomic status areas have a higher prevalence of SLE, and poverty is associated with a higher burden of renal and cardiovascular disease, SLE-related damage and mortality.

Promising Interventions to Address Inequities

Dr. Feldman shared an overwhelming amount of data to illustrate the current state of health inequities in the United States that’s beyond the word count I was allotted for this assignment. And if I’m being frank, I felt depressed hearing it and wondered if inequities might actually be harder to treat than SLE itself. The upside? A lot of great minds—Dr. Feldman included—are designing interventions that might make a difference.

For example, studies show that care navigation interventions could be a good place to start. These include things like weekly phone calls with patient navigators, nurses or social workers to provide health education, care coordination and support. One care navigation intervention study showed a significant increase in perceived lupus self-efficacy and a slight trend toward decreased lupus disease activity.³

Interestingly, even a general integrated care management program not specific to SLE demonstrated benefit, with a 50% reduction in the rate of avoidable emergency department (ED) visits and 63% reduction in the rate of avoidable hospitalizations.⁴ Dr. Feldman noted, “We know that some patients need to be hospitalized and some need to go the ED, so it’s the factors that may be avoidable that we should really be thinking about targeting when we think about navigation interventions.”

Interventions to screen for and meet social needs can also make a difference. Dr. Feldman’s team is currently studying the impact of a screening process in her clinic that adds less than three minutes to the check-in process. When patients with needs are identified, they receive a resource sheet as well as a connection to a community resource specialist who connects the patients with community, hospital, city and state-based resources.

Peer support interventions have also shown benefit, with one study showing cost-effective trends toward improvement in patient activation and engagement in their disease.⁵

Personalized decision aids are another exciting possibility. One study showed a trend toward more informed choices regarding immunosuppressives when patients were given a tablet-based individualized tool to aid with immunosuppressive medication decision making for LN.⁶

Last but not least, community-engaged interventions show promise as well. Academic institutions in the greater Boston and Chicago areas formed partnerships with community-based institutions, like churches and barbershops, and support groups. They educated influential and trusted community members—popular opinion leaders—to spread information about lupus and research. The overarching goal was to first increase SLE and research/clinical trial awareness.⁷

A Path Forward

So what’s next? Dr. Feldman broke it down into three buckets. Many but not all strategies for each bucket are noted here:

1. Data collection and analyses. “To move this field, we need to have a standard collection tool,” Dr. Feldman said. She also mentioned the need to examine intersectionality—the complex, cumulative way in which the effects of multiple forms of discrimination combine, overlap or intersect, and urged researchers to design studies that lead to testable interventions.
2. Intervention Design. She explained that we need to build cross-disciplinary, community-based collaborations. If data are collected on social risk factors or psychosocial stressors, include an immediate intervention to address what is uncovered. “When patient tells us they have chest pain, we have an immediate plan on how to address that. But when a patient tells us they have food insecurity, we don’t,” she said.
3. Advocacy and education. We need to recognize the importance of our advocacy to dismantle the structural drivers of these avoidable inequities and educate students and trainees about inequities and solutions. We need to teach providers concrete ways to reduce reliance on implicit biases, and we need to advocate for sustainable, rheumatology clinic–based resources to address social risk factors and mental health needs.

In Sum

Dr. Feldman ended her talk with a definition from the Centers for Disease Control and Prevention website: “Healthy equity is the state in which everyone has a fair and just opportunity to attain their highest level of health.” She concluded, “I really believe this is possible for our patients with lupus, and I think that we’re all part of the puzzle to advocate for this change.”

Samantha C. Shapiro, MD

Samantha C. Shapiro, MD, is a clinician educator who is passionate about the care and education of rheumatology patients. She writes for both medical and lay audiences and practices telerheumatology.

References

1. Buie J, McMillan E, Kirby J, et al. Disparities in lupus and the role of social determinants of health: Current state of knowledge and directions for future research. ACR Open Rheumatol. 2023;5(9):454–464).
2. Feldman CH, Hiraki LT, Liu J, et al. Epidemiology and sociodemographics of systemic lupus erythematosus and lupus nephritis among US adults with Medicaid coverage, 2000–2004. Arthritis Rheum. 2013;65(3):753–763.
3. White AA, Ba A, Faith TD, et al. The care-coordination approach to learning lupus self-management: A patient navigator intervention for systemic lupus inpatients. Lupus Sci Med. 2021;8(1):e000482.
4. Williams JN, Taber K, Huang W, et al. The impact of an integrated care management program on acute care use and outpatient appointment attendance among high-risk patients with lupus. ACR Open Rheumatol. 2022;4(4):338–344.
5. Williams EM, Egede L, Oates JC, et al. Peer approaches to self-management (PALS): Comparing a peer mentoring approach for disease self-management in African American women with lupus with a social support control: Study protocol for a randomized controlled trial. Trials. 2019;20(1):529.
6. Singh JA, Fraenkel L, Green C, et al. Individualized decision aid for diverse women with lupus nephritis (IDEA-WON): A randomized controlled trial. PLoS Med. 2019;16(5):e1002800.
7. Arneson LC, Taber KA, Williams JN, et al. Use of popular opinion leader models to disseminate information about clinical trials to Black individuals with lupus in two US cities. Arthritis Care Res (Hoboken). 2023;75(1):44–52.