Improving Lupus Drug Regimen Adherence Among Minorities

Rheumatologists can do better at helping systemic lupus erythematosus patients from racial and ethnic minority groups adhere to their lupus medication regimens, according to a paper published in Arthritis Care & Research.

Researchers from Duke University examined medication adherence barriers from the perspectives of healthcare providers and patients. Their findings suggest more attention should be paid to the logistics of immunosuppressive drug regimens, as well as patients’ personal circumstances and internal motivation to adhere to regimens.¹

Dr. Sun

“Patients from racial minority groups tend to have more severe disease and are at higher risk for poor outcomes if they don’t take their medications,” says lead author Kai Sun, MD, assistant professor of medicine at Duke University, Durham, N.C. “Little has been written about the specifics of why barriers to medication adherence among minority patients exist and how to address them.” So the researchers set out to gain a better understanding of these issues.

Drilling Down

An earlier publication from the same study concluded that Black people are far less likely than white people to adhere to lupus medication regimens. It finds a link between nonadherence and Black patient reports of anxiety and perceptions that their interactions with rheumatologists lack compassion and respect.²

The more recent paper examines barriers to adherence among 12 patients—mostly Black—at a Duke clinic.¹ The researchers interviewed the patients, four of whom adhered to their regimens, eight who did not, as well as 12 providers (n=7) and staff (n=5)—primarily white women (75%) who had worked in the lupus clinic for a median of 3.5 years. The researchers measured adherence by noting the number of prescription refills in the previous three months.

Ten (80%) of the patients were women, and 11 (92%) were Black. Half (n=6) had private insurance. On average, patients had lived with lupus for 12 years. Seven patients (58%) were taking mycophenolate, three (25%) were taking azathioprine and two (17%) were taking methotrexate. An interviewer unaffiliated with the clinic asked patients why they skipped doses, stopped medications or found regimens difficult. A provider in the lupus clinic conducted interviews with other providers and staff.

Barriers Identified

Patients and providers noted several barriers related to obtaining medications:

Cost & insurance—Half of the patients said they could not consistently afford medications because of high deductibles, lapses in coverage and onerous application processes for Medicaid and other programs. Insured patients noted high out-ofpocket costs and expensive copays for multiple prescriptions. Providers and staff noted unclear communication about necessary prescriptions refills.

Being busy & other logistics—Half of the patients said they forget to take medications or pick up prescriptions, circumstances they attributed to irregular work schedules and problems taking medicine with food. These included not enough time to eat and lack of appetite. Five providers said patients forget doses—especially in the evening—because of the complexity of drug regimens.

Problems with taking pills & side effects—Five patients and four providers noted the number and size of pills and dose frequency. Providers and staff often noted gastrointestinal discomfort, especially nausea, as a side effect. Patients said nausea—or even worry about it and other side effects—led to skipping meals and doses.

Mental & physical fatigue—Some patients said they tired of taking drugs they would need for the rest of their lives. A quarter of providers and staff sensed patients’ fatigue. Some providers attributed skipped doses to “defeatist attitudes”; others attributed fatigue to depression or younger age. Meanwhile, some patients reported they fell asleep before evening doses or had difficulty waking up in time to eat and take morning doses.

Understanding drugs & their necessity—A quarter of patients said they thought drugs were unnecessary when they felt well, and two providers noted concern about this incorrect perception. Some patients stop taking medications that do not provide immediate or complete relief, providers said. Many believed that patients don’t fully understand how serious lupus is, how medications work or what to expect from those drugs. Providers also blamed insufficient patient education due to time constraints.

External influences—Several providers and staff said patients may pay more attention to information from the internet, family and friends than to information from healthcare providers. Family and friends may not believe patients are sick and discourage them from using medication or suggest alternative therapies or diets.

Dr. Sun was surprised by how often affordability was a barrier, even among insured patients. Only one patient was uninsured. She noted that side effects were described almost exclusively by adherent patients; mainly nonadherent patients discussed logistics-related and intrinsic barriers.

“We may underappreciate all that patients go through to get their medications,” Dr. Sun says. Each patient described a unique mix of barriers to taking lupus medications, but in general they focused on external barriers beyond their immediate control; conversely, providers focused on internal barriers.

“Perhaps we are talking about the same thing. If a patient said ‘I’m too busy,’ it may be driven by a lack of motivation or priority,” Dr. Sun notes. But findings point to the need for an individualized approach to increasing medication adherence among patients.

Improving Adherence

Dr. Sun and her colleagues developed an individualized intervention to help university lupus clinic providers better recognize and address nonadherence. Providers and patients examine pharmacy data on how often patients pick up prescriptions. The providers give positive reinforcement to patients who pick up at least 80% of prescriptions. If there are gaps in refills, the providers ask openended questions about the reasons and try to identify and address each patient’s barriers.

In a 12-week pilot involving 134 patients, the researchers compared adherence rates from three months before the intervention to three months after it. Adherence increased from 11% for hydroxychloroquine, 12% for disease-modifying anti-rheumatic drugs and 9% for mycophenolate mofetil. Among 48 patients who completed surveys, no patient reported feeling angry, upset or embarrassed.³ “We’re trying to improve this intervention,” Dr. Sun says.

She notes tactics others can use, like asking open-ended questions about adherence barriers in ways that validate patient experience. “For example, you can say it’s common to miss doses because many people have trouble remembering, paying for the medications or not understanding what they are for. Then ask, ‘Are those ever an issue for you?’”

Have a list of resources patients can use to help overcome particular barriers, such as contact information for social workers who can help with insurance problems. Recommend applications that help with busyness or forgetting doses.

Build trusting relationships with patients by empathizing with them, Dr. Sun adds. Although her study did not examine systemic racism or providers’ implicit bias, she believes these may sometimes play a role in poor medication adherence.⁴

“Let’s look at how we’re handling clinic encounters with minority patients,” Dr. Sun says. “Equality means everyone gets the same thing, but equity is giving everyone the same opportunity to achieve the same outcomes.”

Deborah Levenson is a writer and editor based in College Park, Md.

References

1. Sun K, Corneli AL, Dombeck C, et al. Barriers to taking medications for systemic lupus erythematosus: A qualitative study of racial minority patients, lupus providers, and clinic staff. Arthritis Care Res (Hoboken). 2021 Mar 4;10.1002/acr.24591.
2. Sun K, Eudy AM, Criscione-Schreiber LG, et al. Racial disparities in medication adherence between African American and Caucasian patients with systemic lupus erythematosus and their associated factors. ACR Open Rheumatol. 2020 Jul;2(7):430–437.
3. Sun K, Rogers J, Sadun R, et al. Intervention to improve SLE medication adherence using Surescripts pharmacy refill data [abstract]. Arthritis Rheumatol. 2020;72(suppl 10).
4. Peckham C. Medscape rheumatologist lifestyle report 2017: Race and ethnicity, bias and burnout. 2017 Jan. 11. https://www.medscape.com/features/slideshow/lifestyle/2017/rheumatology#page=1.