Evidence shows barriers to medication adherence among minority patients with systemic lupus erythematosus (SLE). In a qualitative study published in Arthritis Care & Research, which included both patients and providers, frequently endorsed barriers were medication costs, side effects, and limited patient knowledge of SLE and immunosuppressive medications.1
While racial and ethnic minorities are disproportionately affected by SLE and associated severe manifestations, these populations also experience greater barriers to medication adherence. Prior studies have suggested that up to 75% of patients with SLE do not take their medications as prescribed.2
To better illustrate barriers to medication adherence, Sun et al1 conducted a series of in-depth interviews among 2 sample groups, namely, minority patients with SLE who were currently prescribed oral immunosuppressants (methotrexate, azathioprine, or mycophenolate) and lupus clinic providers and staff. Both study groups were recruited from the Duke University Lupus Clinic in Durham, North Carolina. Using a semi-structured interview guide, the study researchers asked patients to describe the barriers they experienced in obtaining or taking their immunosuppressive medications. Providers and staff were also asked to describe their perceptions of patient barriers. Interviews were audio-recorded, transcribed, and analyzed using thematic analysis. Themes and sub-themes related to adherence were categorized according to the Capability, Opportunity, Motivation, Behavior (COM-B) conceptual model. Patients were considered adherent to treatment if they had a medication possession ratio (MPR) of 80% or higher for all oral immunosuppressive medications.
A total of 12 patients and 12 providers and staff were interviewed. Eight patients had an MPR below 80% (considered nonadherent to treatment) and 4 patients were considered adherent to treatment. In the patient group, 83% (n=10) were women; 92% (n=11) were African American; and 50% (n=6) had private insurance. Median age and average disease duration were 36 years and 12 years, respectively. Majority of providers and staff members were women (n=9; 75%) and White (n=9; 75%). Median duration of employment at the lupus clinic was 3.5 years.
According to the COM-B model, adherence barriers were grouped into 3 categories: capability, or external barriers to acquiring medications; opportunity, or external barriers to taking medications; and motivation, or internal barriers related to taking medications. Capability barriers included issues with cost, insurance coverage, and pharmacies. Half of all patient participants indicated that they could not always afford their medications. Other financial barriers included high deductibles, lapses in insurance coverage, and difficulties applying for Medicaid coverage or other services. One-quarter of patients reported experiencing pharmacy-level issues, such as their preferred pharmacy not carrying all necessary medications.
Opportunity barriers included difficulties remembering to take medications or fill prescriptions, side effects, and medication attributes, including the number or size of pills. More than half of patients indicated that they had trouble remembering to take all medications on schedule or pick up their prescriptions. A total of 5 patients and 4 providers expressed that the size and frequency of pills were substantial barriers, particularly with mycophenolate. Four patients described medication-induced nausea as a barrier to consistent uptake, and 4 indicated that they avoided medications due to fear of side effects. Nearly all providers (n=10) responded that they considered side effects a substantial barrier for patients, particularly gastrointestinal discomfort.
Motivation barriers included mental or physical fatigue, lack of clarity regarding the necessity and efficacy of medications, limited patient knowledge, and the presence of outside influences. One-third of patients indicated that they felt “tired of taking their…medications,” and one-third described physical fatigue and mobility issues as barriers to taking medications. Six patients reported feeling that their medications were not particularly effective against their symptoms. Many providers shared that they felt patients may not “fully understand the seriousness of SLE… [and] what can be expected from SLE treatment.” Three providers explained that weak patient-provider relationships can create mistrust in SLE treatment, which, in turn, affected adherence. Several providers and staff also noted that some patients received conflicting information from outside sources, such as friends, family, and non-lupus providers.
Overall, the most common patient-reported barriers were cost, side effects, being too busy to take medications, and forgetting to take medications. Providers most frequently cited cost, side effects, and insufficient patient understanding of SLE and immunosuppressive medications.
Given the breadth of adherence barriers, the researchers of the study emphasized that efforts to increase adherence must be tailored to individual patients. While the small study cohort may have limited data generalizability, these results provide a foundation for further research regarding SLE medication uptake among minority patients.
To further understand the clinical implications of the study findings, we spoke with lead author Kai Sun, MD, a rheumatologist and assistant professor of medicine at the Duke University School of Medicine in North Carolina.
Could you speak to the relevance of the study you conducted about the barriers to SLE medication adherence among minority patients?
Kai Sun, MD: We decided to conduct this study to better understand barriers, which minority patients with lupus have in taking disease-modifying agents, to inform the development of interventions to address these barriers. We wanted to focus on minority patients because they are known to have higher rates of nonadherence and worse lupus outcomes.3 We focused on disease-modifying agents [in this study] because we found in our prior study that adherence rates for these [agents] are lower compared to anti-malarials,4 and patients taking disease-modifying agents are at higher risk for poor outcomes as these [medications] are typically prescribed for moderate to severe lupus manifestations.
It was discouraging to see from the study findings that financial barriers substantially impeded adherence, even though the majority of patients had health insurance. How can providers better acknowledge and address financial barriers among minority patients?
Dr Sun: The first step is to understand that financial barriers are common and they are often beyond the patient’s immediate control. Having empathy in this context is important. Patients may be reluctant to volunteer [to talk about] financial barriers because they may feel embarrassed to discuss them with their doctor or because they don’t think there is anything the doctor can do to help. The best way to elicit an honest answer is through open-ended and nonjudgmental questions. You may want to preemptively tell the patient when a new medication is prescribed that he/she should inform you if he/she has trouble paying for the medication. Providers may also benefit from training to minimize implicit bias and improve their cultural competency to help promote equity.
Following the completion of your study, what questions still remain that need to be addressed?
Dr Sun: We observed a breadth of experiences that patients with lupus face with adherence barriers, suggesting that an individually tailored approach to adherence intervention based on each patient’s main barrier categories may be optimal. The most important question to answer is how we can most effectively address these adherence barriers in a culturally competent manner that lightens instead of adds to the patient’s burden.
Can you describe a few methods by which clinicians can address logistic barriers to treatment adherence?
Dr Sun: There are many tools and technologies that may help, such as pillboxes and medication reminder apps. Some pillboxes come in novel forms, such as a keychain, that make them easier to carry around. Opting for automatic refills and offering 3-month refills (instead of 1-month ones) may lessen the patient’s burden of getting their medicines from the pharmacy. Certain pharmacies also offer multidose dispensing where they will sort and prepackage all of the pills into small packets for each time of the day when the medications need to be taken.
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). Published online March 4, 2021. doi:10.1002/acr.24591
2. Mehat P, Atiquzzaman M, Esdaile JM, AviNa-Zubieta A, De Vera MA. Medication nonadherence in systemic lupus erythematosus: a systematic review. Arthritis Care Res (Hoboken). 2017;69:1706-1713. doi:10.1002/acr.23191
3. 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;2(7):430-437. doi:10.1002/acr2.11160
4. Popa-Lisseanu MG, Greisinger A, Richardson M, et al. Determinants of treatment adherence in ethnically diverse, economically disadvantaged patients with rheumatic disease. J Rheumatol. 2005;32:913-919.