Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2022 Sep;74(9):1459-1467.
doi: 10.1002/acr.24591. Epub 2022 Jun 1.

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

Kai Sun  1 , Amy L Corneli  2 , Carrie Dombeck  3 , Teresa Swezey  3 , Jennifer L Rogers  4 , Lisa G Criscione-Schreiber  3 , Rebecca E Sadun  3 , Amanda M Eudy  4 , Jayanth Doss  3 , Hayden B Bosworth  5 , Megan E B Clowse  4
Affiliations

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

Kai Sun et al. Arthritis Care Res (Hoboken). 2022 Sep.

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.

PubMed Disclaimer

Conflict of interest statement

Conflict of Interest: There is no commercial support or financial conflict of interest to report.

Figures

Figure 1.
Figure 1.
The Capability, Motivation, Opportunity, Behavior (COM-B) conceptual model.
See this image and copyright information in PMC

References

    1. Feldman CH, Hiraki LT, Liu J, et al. Epidemiology and sociodemographics of systemic lupus erythematosus and lupus nephritis among US adults with Medicaid coverage, 2000–2004. Arthritis Rheum 2013; 65: 753–63. - PMC - PubMed
    1. Cooper GS, Parks CG, Treadwell EL, et al. Differences by race, sex and age in the clinical and immunologic features of recently diagnosed systemic lupus erythematosus patients in the southeastern United States. Lupus 2002; 11: 161–167. - PubMed
    1. Costenbader KH, Desai A, Alarcón GS, et al. Trends in the incidence, demographics, and outcomes of end-stage renal disease due to lupus nephritis in the US from 1995 to 2006. Arthritis Rheum 2011; 63: 1681–1688. - PMC - PubMed
    1. Krishnan E, Hubert HB. Ethnicity and mortality from systemic lupus erythematosus in the US. Ann Rheum Dis 2006; 65: 1500–5. - PMC - PubMed
    1. Bertsias GK, Tektonidou M, Amoura Z, et al. Joint European League Against Rheumatism and European Renal Association-European Dialysis and Transplant Association (EULAR/ERA-EDTA) recommendations for the management of adult and paediatric lupus nephritis. Ann Rheum Dis 2012; 71: 1771–82. - PMC - PubMed

Publication types

MeSH terms

LinkOut - more resources