Many factors such as finances, access problems, or fear of side effects could explain why underserved patients in racial and ethnic minority groups don’t take their medication for systemic lupus erythematosus (SLE). However, a new study in Arthritis Care Research found that barriers to adherence are both intrinsic and extrinsic to the patient, calling for an individualized approach to adherence intervention.

“In addition to advocating for structural changes, clinicians may benefit from training to minimize implicit bias and improve cultural competency to help promote equity in an otherwise inequitable health care system,” Kai Sun, MD, assistant professor of medicine at Duke University, Durham, N.C., and the study’s lead author, said in an interview. Antimalarial and immunosuppressive drugs can slow disease and help prevent organ damage, but up to 75% of SLE patients don’t take them as prescribed. This is especially true in racial and ethnic minority patients, who often suffer disproportionately from severe SLE. The reason for this is complex, Dr. Sun said. “Both genetic and environmental factors play a role. Psychosocial stressors such as childhood traumas and experiences of racial discrimination as well as racial disparities in medication adherence and health care can all contribute to disparities in outcomes.” To inform intervention development, Dr. Sun and colleagues decided to investigate the barriers minority lupus patients face in taking disease-modifying antirheumatic agents (DMARDs). Prior research found that adherence rates for DMARDs were lower in comparison with antimalarials. “Patients taking DMARDs are at higher risk for poor outcomes, as DMARDs are typically prescribed for moderate to severe lupus manifestations,” Dr. Sun explained.

Dr. Kai Sun

In addition to advocating for structural changes, clinicians may benefit from training to minimize implicit bias and improve cultural competency to help promote equity in an otherwise inequitable health care system.

Multiple factors examined to assess nonadherence The qualitative study relied on in-depth interviews with 12 SLE racial minority patients (4 adherent, 8 nonadherent) and 12 lupus clinic providers and staff. Patients were predominantly female and African American and 50% had private insurance. All patients had prescriptions for oral immunosuppressants (methotrexate, azathioprine, or mycophenolate). Investigators used the Capability, Opportunity, Motivation, Behavior conceptual model to group adherence barriers by theme. This explored external factors such as cost, pharmacy and clinic-related issues, barriers to taking medications, and factors relating to patient attitudes and knowledge about their medications. Patients and lupus clinic providers and staff had overlapping but complementary perspectives on adherence barriers. Many of the responses confirmed what previous research has reported on SLE medication nonadherence. Patients cited access and financial problems, side effects concerns, and some behavioral reasons, such as perceived treatment ineffectiveness, denial of their SLE, or the fact that their condition had improved. Cost was a big factor: Half of the patients said they couldn’t afford the drugs, even though just one participant was uninsured. Some extenuating factors related to cost included high deductibles, lengthy applications in applying for Medicaid and other support services, not getting total coverage for medications, and insurance lapses. “As clinicians, we know that getting certain medications approved can be a complicated process, but I think we often still underappreciate the work and hassle some patients have to go through to get their medications when they also have to work odd hours, take care of family members, endure the stress of structural racism – all while being physically ill,” Dr. Sun said. While some patients reported that debilitating physical symptoms led to nonadherence, more than half admitted that they would forget to take or refill their medications, citing timing issues with their schedule, “brain fog,” or logistical problems associated with taking their pills with food. Side effects or fear of side effects such as nausea or severe adverse reactions were cited as a deterrent. Nearly all of the providers and staff respondents said that side effects such as gastrointestinal discomfort aggravated nonadherence. Top image credit: SDI Productions/E+/Getty Images Image credit: Marcos Calvo/Getty Images

Pill fatigue Negative attitudes or skepticism about the value of taking medications affected adherence as well. The investigators reported “several unique barriers related to the patient and his/her experiences in the clinic that have not been well described in prior studies, including having a defeatist attitude, lack of trust or understanding, and insufficient patient education. “These may be particularly relevant to the racial minority patients who are the focus of this study, as social inequalities and discrimination experienced by racial minorities have been linked to worse patient-provider communication, distrust in medical professionals, mood disturbance, and a sense of powerlessness,” they wrote. Patients and providers alike reported pill fatigue as a contributor to nonadherence. Some patients said they didn’t want to face taking medications every day for the rest of their lives. “A quarter of providers and staff said they sensed patients’ pill fatigue, attributing it to patients’ denial of illness, because taking medications regularly is a reminder of chronic illness,” according to Dr. Sun and colleagues. Other patients had “defeatist” attitudes about trying to improve their health or had doubts about a medication’s effectiveness. Three of the patients questioned the need to take a drug if they were feeling well. Providers and staff noticed that some patients were more likely to rely on information from nonmedical sources such as family, friends, and the Internet, rather than consult with lupus medical experts. Differences between adherent and nonadherent patients Each patient reported different barrier combinations and clusters in reporting SLE drug adherence. The investigators did notice a few distinctions and similarities among adherent and nonadherent groups. Both groups reported insurance and cost barriers, although nonadherent groups were more likely to cite logistics-related and intrinsic barriers, whereas side effects were a key barrier in adherent patients. “This suggests that perhaps side effects and certain financial barriers, though common, are not insurmountable drivers of nonadherence,” the investigators noted. While patient and provider/staff responses mostly complemented each other, patients were more likely to cite daily specific daily struggles such as work and eating schedules, mobility issues, physical barriers of fatigue, and patient assistance programs. Providers and staff placed more emphasis on clinic-related obstacles. Image credit: fizkes/Getty Images

An individualized approach “The breadth of experience of lupus patients with adherence barriers suggests that an individualized approach may be necessary to best address adherence barriers. This may require combining interventions that address external barriers (affordability, pharmacy issues, logistic issues) with those that increase internal motivation,” Dr. Sun said. How to do this in practice needs more study, she added. “I imagine one way this can be done is through a system that first reliably identifies patients who have trouble with adherence, their adherence barriers, and then match those barriers with the appropriate resources and interventions.” Examples may include a referral to social workers for those with insurance issues, a reminder app for those who are forgetful, and peer support for those who lack motivation. “I hope this study will help us to have more empathy toward our patients and develop interventions and advocate for systemic change that alleviate their burden,” Dr. Sun said. The authors reported no commercial support or financial conflict of interest.