African Americans with systemic lupus erythematosus (SLE) experience worse outcomes than any ethnic group with the autoimmune disorder, and rheumatologists point to lower medication adherence as a potential contributing factor.

Physicians at the Duke Lupus Clinic, one of the largest in the Southeast, are developing interventions for the clinic’s patients to improve medication adherence, says Kai Sun, MD, MS, a Duke rheumatologist who has done surveys and in-depth interviews of patients to assess the causes of medication nonadherence.

The lack of medication compliance contributes to poor outcomes for all patient populations, Sun notes, but African Americans are more likely to have severe manifestations of SLE and therefore are more vulnerable to the deleterious effects of nonadherence. One severe manifestation is lupus nephritis, which can progress to renal failure and dialysis dependence without medical therapy. The problem of nonadherence is most noticeable among patients prescribed disease-modifying antirheumatic medications (DMARDs) to treat moderate to severe lupus manifestations.

Generally, SLE requires prompt, consistent medical treatment, Sun says. Duke rheumatologists, who serve a large number of African American patients as a regional referral center, want to create more effective tools to promote better medication use and reduce healthcare disparities in SLE. "Our clinic works with a large population of patients with limited financial resources, many of whom are covered by Medicaid or have physical disabilities,” she says. “This population faces more challenges in acquiring and taking their medications."

“In addition, some patients do not take their medications consistently when they do not feel sick,” Sun adds. “But effective lupus treatment requires long term, consistent use of immunosuppressive and immunomodulatory medications.”

Patient interviews have already yielded insights into some causes of nonadherence:

• Medication cost is a major issue.

• Medication access to some SLE drugs, such as mycophenolate, requires preparation by specialty pharmacies.

• Complex dosage instructions can impair consistent, correct use. For example, mycophenolate requires ingesting as many as six large pills per day.

• Religious convictions and trust in alternative therapies sometimes contribute to skepticism about the value of SLE medication.

“We will use information from patient interviews to develop interventions,” Sun says. “We want to address gaps in beliefs and knowledge as well as external barriers such as cost and pharmacy issues to help patients take their medications regularly.”

Sun’s work is funded by the Duke Center for Research to Advance Health Equity, an initiative created to develop and test interventions that reduce racial and ethnic disparities. Sun received a career development award from the REACH Equity center to support the research into improving the quality of patient-centered care in clinical settings for SLE patients.