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Barriers to Taking Medications for Systemic Lupus Erythematosus: A Qualitative Study of Racial Minority Patients, Lupus Providers, and Clinic Staff.
Abstract
<h4>Objective</h4>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.<h4>Methods</h4>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.<h4>Results</h4>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.<h4>Conclusion</h4>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.
Type
Journal articleSubject
HumansLupus Erythematosus, Systemic
Azathioprine
Immunosuppressive Agents
Qualitative Research
Ethnic and Racial Minorities
Permalink
https://hdl.handle.net/10161/29376Published Version (Please cite this version)
10.1002/acr.24591Publication Info
Sun, Kai; Corneli, Amy L; Dombeck, Carrie; Swezey, Teresa; Rogers, Jennifer L; Criscione-Schreiber,
Lisa G; ... Clowse, Megan EB (2022). Barriers to Taking Medications for Systemic Lupus Erythematosus: A Qualitative Study
of Racial Minority Patients, Lupus Providers, and Clinic Staff. Arthritis care & research, 74(9). pp. 1459-1467. 10.1002/acr.24591. Retrieved from https://hdl.handle.net/10161/29376.This is constructed from limited available data and may be imprecise. To cite this
article, please review & use the official citation provided by the journal.
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Show full item recordScholars@Duke
Hayden Barry Bosworth
Professor in Population Health Sciences
Dr. Bosworth is a health services researcher and Deputy Director of the Center of
Innovation to Accelerate Discovery and Practice Transformation (ADAPT) at the Durham
VA Medical Center. He is also Vice Chair of Education and Professor of Population
Health Sciences. He is also a Professor of Medicine, Psychiatry, and Nursing at Duke
University Medical Center and Adjunct Professor in Health Policy and Administration
at the School of Public Health at the University of North Carolina at Cha
Megan Elizabeth Bowles Clowse
Associate Professor of Medicine
Dr. Megan Clowse is an Associate Professor of Medicine in the Division of Rheumatology
and Immunology. Her clinical research focuses on the management of rheumatic diseases
in pregnancy. She has cared for over 600 pregnancies in women with rheumatic disease,
collecting information on these pregnancies initially in the Duke Autoimmunity in
Pregnancy Registry and Repository, and now the MADRA (Maternal Autoimmune Disease
Research Alliance) registry and repository. She served on the
Amy Lynn Corneli
Associate Professor in Population Health Sciences
A social scientist by training, Dr. Amy Corneli has conducted qualitative and mixed-method
research in multiple countries in sub-Saharan Africa, the Middle East, South and Southeast
Asia, and in the U.S. She has a long trajectory of working with community partners
on research with populations who are disenfranchised due to race, ethnicity, sexuality,
and/or gender, and of engaging key contributors in research to inform clinical trials
and practice, socio-behavioral interventions, questio
Lisa Giorgina Criscione-Schreiber
Professor of Medicine
My clinical interests include systemic lupus erythematosus (SLE) and inflammatory
myopathies, specifically dermatomyositis, polymyositis, and the anti-synthetase syndrome.
Additionally, I maintain a general rheumatology continuity clinic for individuals
with rheumatoid arthritis, vasculitis, and other forms of inflammatory arthritis and
autoimmune diseases. In 2007, I co-founded the Duke Lupus Clinic with Dr. Megan Clowse.
We have continued this clinic with the aim to i
Amanda Marie Eudy
Assistant Professor in Medicine
Rebecca Eli Sadun
Assistant Professor of Medicine
I am an adult and pediatric rheumatologist with clinical and research interests in
the areas of lupus and transition to adult care. My time is split between the departments
of Medicine and Pediatrics. In addition to seeing patients in both environments,
I run a dedicated Young Adult Rheumatology Clinic.
Kai Sun
Assistant Professor of Medicine
My clinical interests are in general rheumatology, lupus, and musculoskeletal ultrasound.
My research interest is in healthcare disparities and medication adherence in rheumatology.
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