2021 Theses Master's

Exploring the Diagnostic Journeys of Women with Systemic Lupus Erythematosus in New York City: A Qualitative Research Proposal

Nadel, Talia

Despite being a relatively common autoimmune disease that physicians are trained to recognize, the average time to diagnosis for patients with systemic lupus erythematosus (SLE) is approximately 6 years. In addition to this troubling overall diagnostic delay, women typically wait almost two years longer than men to receive a diagnosis, and there is also emerging preliminary evidence of racial/ethnic disparities in time to diagnosis. Approximately 90% of SLE patients are women, and the prevalence of SLE is higher among racial and ethnic minorities than among white people in the United States. Despite this, the literature regarding the factors that contribute to diagnostic delay is not robust, and there is a significant gap when it comes to examining gender and racial disparities in particular. The proposed study will utilize qualitative research methods informed by narrative inquiry and grounded theory to examine the diagnostic journeys of women with systemic lupus erythematosus in New York City with a focus on the ways in which gender and race shape patient-provider interactions and time to diagnosis. Data collection will occur in two phases. The first phase will involve conducting 20 key informant interviews with medical providers, social service providers, and employees at patient advocacy organizations as well as observing patient support group sessions. The second phase will consist of semi-structured in-depth interviews with 12 women with SLE. Drawing from a narrative approach, each woman will be interviewed three separate times. These diagnostic journey narratives will be analyzed using thematic analysis.