Primary Submission Category: Health care/services
“Check your bias at the door” and other recommendations for improving lupus care: Results from a qualitative study with Black Lupus Warriors
Authors: Rachel Bergmans Bhaavna Yalavarthi Johari Summerville Nikki Farahani Lillian Xiao Christine Yu Deena Aboul-Hassan Sia Rajgarhia Daniel Clauw J. Michelle Kahlenberg Melissa DeJonckheere
Presenting Author: Rachel Bergmans*
BACKGROUND: Systemic lupus erythematosus (SLE) is an autoimmune condition that disproportionately affects Black women. Systemic racism and discrimination can be found in various settings in the United States, including the healthcare system. Understanding the effects of these factors on healthcare can inform recommendations for improving SLE care.
AIM: We aimed to identify opportunities to improve SLE care for Black patients.
METHODS: This study is using an interpretive description approach. We conducted semi-structured interviews and focus groups with Black adults diagnosed with SLE. The interviews and focus group meetings covered topics such as diagnosis, symptom management, symptoms affecting day-to-day life, and experiences with healthcare providers. After de-identifying the interview and focus group transcripts, we analyzed the transcripts using an inductive, thematic analysis and created a preliminary coding scheme. Our theme development focuses on areas of improvement in lupus care.
RESULTS: We completed 30 interviews (96% female, mean age = 41 years) and 7 focus groups (6-8 participants per group). The preliminary coding scheme currently includes 4 categories: (1) Awareness of lupus signs and symptoms among non-rheumatologists; (2) Prioritizing relationships with patients; (3) Monitoring medication response and adherence; and (4) Comprehensive care plans.
NEXT STEPS: The next step for this study is to apply the preliminary coding scheme to the semi-structured interviews and develop and finalize our main themes. Once we complete the codebook, we will use it to analyze the focus group transcripts to further contextualize our main themes.
CONCLUSIONS: Our results highlight areas of improvement in SLE care, especially from the perspective of Black patients. Furthermore, patient-provider relationships play a large role in effectiveness of care and quality of life while living with SLE.