Subpar lupus medication adherence among minorities may require 'individualized approach'
Although cost, side effects and a busy schedule are among the most cited barriers to lupus treatment adherence in racial minorities, specific hurdles vary by patient and adherence level, requiring a personalized approach, according to data.
“Even though we have known for a long time that medication adherence is suboptimal in patients with lupus, particularly underrepresented racial and ethnic minorities, barriers to medication adherence have not been well studied,” Kai Sun, MD, MS, of Duke University Medical Center, in Durham, North Carolina, told Healio Rheumatology. “Existing qualitative studies to elucidate reasons for non-adherence have not specifically focused on racial and ethnic minorities or on those taking immunosuppressive medications, patients who are at highest risk of poor outcomes.”
“Additionally, most of the existing studies have only included patient but not clinician perspectives, and rarely included the use of conceptual models to facilitate understanding of the relationships among barriers and to inform intervention development,” she added. “Our study provides a more comprehensive understanding of adherence barriers and fills in some of these gaps in knowledge.”
To analyze the barriers to immunosuppressive adherence among racial minorities with SLE, Sun and colleagues conducted a qualitative descriptive study based on interviews with 24 individuals. Participants included 12 patients — four adherent and eight non-adherent — and 12 providers and staff at the Duke University Lupus Clinic. Adherence was based on pharmacy refills during the previous 3 months and defined as a medication possession ratio of 80% or higher for all immunosuppressive drugs.
Among the patients, 92% were African American. Meanwhile, 75% of the interviewed providers and staff were white. Half of the patients had private insurance. In all patients, 58% were being treated with mycophenolate, 25% were receiving azathioprine and 17% were taking methotrexate. Interviewed providers included five physicians and two advanced practitioners, while interviewed staff included four nurses or medical assistants and one pharmacist.
Interviews with patients lasted about 60 to 90 minutes and were conducted by a trained qualitative interviewer unaffiliated with the Duke lupus clinic, in a private conference room outside the clinic or over the phone. Patients were asked to describe barriers they experienced in obtaining and taking their immunosuppressive SLE medications, including factors that contributed to skipping or stopping their medications, and situations that make taking their medications more difficult.
They were also prompted to comment on common barriers found in literature, including cost, lack of time, side effects, beliefs about medications and communication with providers, as well as how their disease makes them feel.
Interviews with providers and staff lasted 30 to 45 minutes and were conducted by Sun, who is also a provider at the lupus clinic, either in a private area or over the phone. Providers were asked to describe their views on the adherence barriers faced by patients, including reasons they think patients do not follow prescription directions. They were also asked about situations during clinic visits that negatively impact adherence.
All interviews were recorded, transcribed and made anonymous for analysis.
According to the researchers, analysis of the interviews revealed three categories related to adherence barriers. “Capability” barriers included external factors related to acquiring treatments, such as cost and pharmacy- and clinic-related issues. “Opportunity” barriers included external barriers to taking medications, such as logistic and medication-related issues. Lastly, “motivation” barriers included intrinsic factors, such as patients’ knowledge, beliefs and attitudes, as well as their physical and mental health.
The most common barriers cited by patients were cost, side effects, a busy schedule or forgetting to take medication, and a lack of understanding, the researchers wrote. However, individual barriers varied by patient and adherence level. For example, patients who were nonadherent predominantly cited logistic and intrinsic barriers, while those who were adherent more often described side effects as a common barrier.
“Interestingly, while patients focused more on external factors that were often beyond their control, providers and staff emphasized patients’ internal factors, such as their lack of understanding, incorrect beliefs, knowledge and attitudes,” Sun said. “We also found that, among the 12 patients we interviewed, each one had a unique set of adherence barriers, suggesting the need for a more individualized approach to adherence interventions based on each patient’s main barrier categories.”
According to Sun, adherence barriers are frequently extrinsic to the patient due to circumstances outside of their immediate control, such as affordability, insurance and pharmacy issues, as well as busy work and family schedules.
“These likely disproportionately impact underrepresented minority groups who are known to suffer from disparities in socioeconomics,” Sun said. “On a systems level, sustained, widespread structural changes are needed to overcome these barriers. From a grassroots perspective, clinicians may benefit from training to minimize implicit bias and improve cultural competency to help promote equity in an otherwise inequitable health care system.”
“In addition, the breadth of experience of lupus patients with adherence barriers suggests that an individualized approach may be necessary to best address adherence barriers,” she added. “This may require combining interventions that address external barriers — affordability, pharmacy issues, logistic issues — with those that increase internal motivation. One reason for that is when patients say they didn’t take their medications due to forgetfulness or busyness, it’s possible that that’s also driven by an underlying internal issue such as lack of knowledge or priority.”