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.

Department

Description

Provenance

Citation

Published Version (Please cite this version)

10.1002/acr.24591

Publication Info

Sun, Kai, Amy L Corneli, Carrie Dombeck, Teresa Swezey, Jennifer L Rogers, Lisa G Criscione-Schreiber, Rebecca E Sadun, Amanda M Eudy, et al. (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.

Scholars@Duke

Sun

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.

Corneli

Amy Lynn Corneli

Professor in Population Health Sciences

Dr. Amy Corneli, a social scientist by training, conducts qualitative, mixed-method, intervention, and implementation science research. Her work spans the U.S. and multiple countries in sub-Saharan Africa, the Middle East, and South and Southeast Asia. She has a history of collaborating with and learning from community organizations and representatives in conducting research with populations that face discrimination, bias, or unequal treatment within the healthcare system and society due to race, ethnicity, gender, sexual orientation, or socioeconomic status. Her collaborative research often focuses on generating synergies between the creativity of art and the analytical thinking of science. The findings from her research inform clinical trials and practice, socio-behavioral interventions, guideline development, and the practical dissemination of proven interventions.

Dr. Corneli's current research portfolio encompasses three areas:

  1. Leading, co-leading, mentoring, and supporting qualitative, mixed-methods, and implementation science research in HIV prevention.
  2. Serving as a methodological investigative partner on qualitative, mixed-methods, and intervention research on a variety of health conditions and topics with faculty in the School of Medicine at Duke University.
  3. Leading the social science team for the Clinical Trials Transformation Initiative, a public-private initiative between Duke University and the U.S. Food and Drug Administration.


Dr. Corneli is also the:

  1. Founder and Director of QualCore, a group of PhD- and master-level social scientists who partner with Duke faculty to provide scientific direction and interviewing and analysis expertise in qualitative research.
  2. Co-founder and Director of The BASE (Bioethics and Stakeholder Engagement) Lab, a group of faculty and staff that partner with clinical investigators at Duke to conduct research with key contributors to inform the planning, conduct, interpretation, and reporting of clinical research.
  3. Director of the Duke CFAR Social and Behavioral Sciences Core.


QualCore | https://populationhealth.duke.edu/research/qualcore

The BASE Lab | https://populationhealth.duke.edu/research/base-lab

Duke CFAR Social and Behavioral Sciences Core | https://cfar.duke.edu 

Clinical Trials Transformation Initiative | https://www.ctti-clinicaltrials.org 

Prior to joining Duke University, Dr. Corneli was engaged in biomedical HIV prevention research at FHI 360 for 10 years.

Criscione-Schreiber

Lisa Giorgina Criscione-Schreiber

Professor of Medicine

My clinical interests include systemic lupus erythematosus (SLE) and inflammatory myopathies.  I also  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 improve the health and quality of life for individuals living with lupus. 

My primary research interests are in education and in SLE.  My particular interest within education is learner assessment.  I was previously funded by a Clinician Scholar Educator Award through the Rheumatology Research Foundation of the American College of Rheumatology.  My CSE project explored validation of a rheumatology objective structured clinical examination (ROSCE). I continue to collaborate with the Rheumatology Program Directors at UNC Chapel Hill, Wake Forest University, the Medical University of South Carolina and Massachusetts General Hospital through our Carolinas Fellows Collaborative. Members of this group composed the competency-based goals and objectives (CBGO) for all learning activities of rheumatology fellowship training programs, which were adopted by the American College of Rheumatology and are posted on their website. I have been very involved in rheumatology curricular efforts through the American College of Rheumatology. I served on the Milestones working group and am a past member and past Chair of the ACR Curriculum Subcommittee of the Committee on Training and Workforce. I previously participated on the ACR/NBME rheumatology in-training examination working group.               

Clinical research in lupus has included the Duke Lupus Registry population.  Our recent work focuses on creating and defining the type 1 and type 2 lupus paradigms for classifying lupus disease activity.  Additional interests through the Duke Lupus Clinic include elucidating clinician-level factors that can influence medication adherence as well as determining how health literacy and numeracy impact adherence and patient level outcomes.  I collaborate with Dr. Megan Clowse, who studies reproductive health in women with autoimmune diseases.  We have combined her subject matter expertise with my educational skills to create HOP-STEP, a program to teach patients with lupus and their rheumatologists about pregnancy planning to improve health outcomes.  We have created lupuspregnancy.org, which houses many resources and videos designed to teach rheumatologists to better partner with women with lupus to have open and honest discussions about pregnancy planning.  Our ultimate aim is to improve the health outcomes for women with lupus and their offspring. 

Sadun

Rebecca Eli Sadun

Associate 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 in collaboration with Duke Family Medicine.

Eudy

Amanda Marie Eudy

Assistant Professor in Medicine
Bosworth

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 Chapel Hill. His research interests comprise three overarching areas of research: 1) clinical research that provides knowledge for improving patients’ treatment adherence and self-management in chronic care; 2) translation research to improve access to quality of care; and 3) eliminate health care disparities. 

Dr. Bosworth is the recipient of an American Heart Association established investigator award, the 2013 VA Undersecretary Award for Outstanding Achievement in Health Services Research (The annual award is the highest honor for VA health services researchers), and a VA Senior Career Scientist Award. In terms of self-management, Dr. Bosworth has expertise developing interventions to improve health behaviors related to hypertension, coronary artery disease, and depression, and has been developing and implementing tailored patient interventions to reduce the burden of other chronic diseases. These trials focus on motivating individuals to initiate health behaviors and sustaining them long term and use members of the healthcare team, particularly pharmacists and nurses. He has been the Principal Investigator of over 30 trials resulting in over 400 peer reviewed publications and four books. This work has been or is being implemented in multiple arenas including Medicaid of North Carolina, private payers, The United Kingdom National Health System Direct, Kaiser Health care system, and the Veterans Affairs.

Areas of Expertise: Health Behavior, Health Services Research, Implementation Science, Health Measurement, and Health Policy

Clowse

Megan Elizabeth Bowles Clowse

Associate Professor of Medicine

Dr. Megan Clowse is an Associate Professor of Medicine and Chief of the Division of Rheumatology and Immunology; she also holds joint appointments in the Department of Obstetrics and Gynecology and Population Health Sciences.  Her clinical research focuses on the management of rheumatic diseases in pregnancy. She has cared for over 1000 pregnancies in women with rheumatic disease, collecting information on these pregnancies initially in the Duke Autoimmunity in Pregnancy Registry and Repository, and the MADRA (Maternal Autoimmune Disease Research Alliance) registry and repository.  She served on the Core Leadership Team for the inaugural American College of Rheumatology's Reproductive Health Guidelines, published January 2020.  Dr. Clowse created www.LupusPregnancy.org and www.ReproRheum.Duke.edu, websites dedicated to improving pregnancy planning and management for patients and rheumatologists.  

Dr. Clowse was the founding director of the Duke Lupus Clinic, where she continues to see patients each week and mentor junior faculty researchers.  The team has developed a new approach to lupus classification and management and is currently collecting and analyzing patient- and physician-reported measures to  better clarify this construct.  



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