Barriers to Taking Medications for Systemic Lupus Erythematosus: A Qualitative Study of Racial Minority Patients, Lupus Providers, and Clinic Staff

Abstract

Objective Underrepresented racial and ethnic minorities are disproportionately affected by systemic lupus erythematosus (SLE). Racial and ethnic minorities also have more severe SLE manifestations that require use of immunosuppressive medications, and often have lower rates of medication adherence. We aimed to explore barriers of adherence to SLE immunosuppressive medications among minority SLE patients. Methods We conducted a qualitative descriptive study using in‐depth interviews with a purposive sample of racial minority SLE patients taking oral immunosuppressants (methotrexate, azathioprine, or mycophenolate), and lupus clinic providers and staff. Interviews were audiorecorded, transcribed, and analyzed using applied thematic analysis. We grouped themes using the Capability, Opportunity, Motivation, Behavior conceptual model. Results We interviewed 12 SLE patients (4 adherent, 8 nonadherent) and 12 providers and staff. We identified capability barriers to include external factors related to acquiring medications, specifically cost‐, pharmacy‐, and clinic‐related issues; opportunity barriers to include external barriers to taking medications, specifically logistic‐ and medication‐related issues; and motivation factors to include intrinsic barriers, encompassing patients' knowledge, beliefs, attitudes, and physical and mental health. The most frequently described barriers were cost, side effects, busyness/forgetting, and lack of understanding, although barriers differed by patient and adherence level, with logistic and intrinsic barriers described predominantly by nonadherent patients and side effects described predominantly by adherent patients. Conclusion Our findings suggest that interventions may be most impactful if they are designed to facilitate logistics of taking medications and increase patients' motivation while allowing for personalization to address the individual differences in adherence barriers.

How Can We Enhance Adherence to Medications in Patients with Systemic Lupus Erythematosus? Results from a Qualitative Study

“…Another study from New Zealand [ 17 ] provided implications that addressing patients’ concerns about side-effects may improve the relationship between the treating physician and the patient and thereby improve adherence. As in our study, results from other qualitative interview studies [ 18 , 19 , 20 , 21 , 22 , 23 ] suggested that improvements in communication between physicians and patients, making medications affordable and available, increasing the patients’ knowledge about the disease and therapeutic options, challenging the patients’ beliefs regarding medication effectiveness with well-documented evidence as well as facilitating access to healthcare, all are crucial factors that can be expected to contribute to increasing medication adherence.…”

“…Overall, our findings concurred with suggestions for interventions against medication non-adherence derived from previous studies involving patients with SLE [ 2 , 41 , 42 ] and other chronic diseases [ 43 ]. Several previous studies have described methods for enhancing adherence to medications in patients with SLE [ 16 , 17 ], some of which were qualitative studies (e.g., from Jamaica, Portugal, the United Kingdom (UK), and the United States (US)) [ 18 , 19 , 20 , 21 , 22 , 23 ], while others explored and evaluated specific interventions in patient groups [ 44 , 45 , 46 , 47 ]. Improved communication between the healthcare and patients along with increased information about the rationale for taking the medication as well as less complicated medication regimens improved adherence in an American study [ 16 ].…”

“…Explaining to the patients how taking a specific drug will benefit them and communicating information about the potential side-effects of the drug have been shown to be important elements, as have providing in-depth information about the disease [ 16 , 17 ]. In this respect, well-informed patients may acquire more positive beliefs on medications and make grounded shared decisions together with their physician, which they are more inclined to follow [ 18 , 19 , 20 , 21 , 22 , 23 ].…”

Patient and healthcare team recommended medication adherence strategies for hydroxychloroquine: results of a qualitative study informing intervention development

“…Sun et al classified medication barriers according to components of the Capability, Opportunity, Motivation, Behaviour change theory. 15 A recent study highlighted that effective patient-physician communication and understanding patients' desires and suggested strategies could improve medication adherence. 8 Building on this work, an intervention was developed based on the key domains of two gold-standard general adherence interventions (Medication Adherence Self-Report Inventory-Visual analogue scale and Brief Medication Questionnaire).…”

“…We developed six semi-structured virtual focus groups; four patient focus groups and two healthcare advisor focus groups. The interview guide was developed based on a literature review of patients' and providers' experiences with HCQ and other medications, [13][14][15] and by adapting a focus-group guide used in a prior study on smoking cessation in patients with autoimmune diseases and communication in paediatric diabetes clinics. 23 24 Leveraging blueprints from our team's prior qualitative work 23 and expert facilitators, we planned an onboarding session and a series of four meetings for continuous stakeholder engagement.…”