Psychosocial Factors and Lupus Disease Progression Among African American Women

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PROJECT SUMMARY/ABSTRACT People living with an autoimmune disease, including those with systemic lupus erythematosus (SLE), have been especially impacted by the COVID-19 pandemic. People with a pre-existing health condition such as SLE are more susceptible to severe disease. Hence, testing and vaccination among people with SLE, and others in their household and social network is a paramount public health concern. However, structural barriers have prevented optimization of testing and vaccination, and African American women in particular have experienced qualitatively unique challenges to engage in these behaviors. Though only about 7% of the total U.S. population, African American women represent approximately half of all SLE cases. Existing barriers in access to health care (e.g., distance, transportation, access to technology) have been magnified during this unprecedented period. Other psychosocial stressors, including those related to COVID-19 illness and bereavement, employment, racism, and multiple role responsibility and other family demands, compromise chronic disease management as well as testing and vaccination behaviors. The purpose of this competitive revision application is to identify barriers and facilitators to COVID-19 testing and vaccination among people living with SLE using both qualitative and quantitative methods. We will evaluate the efficacy of a novel peer-led intervention to enhancing these behaviors among people living with SLE and others in their household/social network using a randomized controlled trial design. The aims of this project will be achieved by leveraging an existing patient roster of over 2500 people living with SLE in Birmingham, Alabama. We also recruit people living with SLE in New Orleans, Louisiana. These two areas are a high priority given low rates of testing and vaccination in the region. Our intervention is based on individually tailored outreach and education that addresses concerns about COVID-19 specifically in the context of having an autoimmune disease; plus providing options for home testing, and a “vaccine concierge” program that involves identifying the most convenient location, scheduling the appointment, arranging for transportation, and sending reminders for them and their network members. This approach is supported by research indicating that hesitancy may be effectively addressed by increasing opportunities and implementing facilitators to get tested and vaccinated. Lessening barriers mitigates hesitancy and passive refusal; when offered testing and vaccination, even those who are hesitant may accept. Moreover, there are those who are indeed testing and vaccine “willing,” but have not yet been because of other constraints (e.g., time, inconvenience, not knowing where to go); providing them with tools to access testing and vaccination will facilitate engagement. We also hypothesize that recruiting a testing/vaccination “partner” will enhance these behaviors as suggested by other behavioral intervention research on the importance of social networks and peer norms in supporting health- related behaviors. This research has broader implications for testing/vaccination in clinical populations.