Objective: To evaluate patient perceptions of biologic therapies from a large, population-based cohort of patients with SLE with significant numbers of blacks and whites and across the full spectrum of socioeconomic strata and disease severity.
Methods: This was a cross-sectional study of validated patients with SLE enrolled in the Georgians Organized Against Lupus Cohort between September 2014 and August 2015. The survey instrument was developed ad hoc by the authors and contained an introduction on biologics.
Results: A total of 676 participants were on average 48.4 years old with 15.9 years of disease; 93.2% were female and 80.6% were black; 34.2% had private health insurance and 9.8% had no insurance; and 26.8% and 27.5% had Medicare or Medicaid, respectively. Of all respondents, 30.8% had heard of biologics, with a significant difference between blacks and whites (25.2% vs 53.4%, respectively). There were no significant differences, however, between blacks and whites with respect to ever having been on biologics (7.6% and 11.5%, respectively) or where they got their information about biologics. Out of 202 individuals who had heard of biologics, 102 (51.3%) were familiar with potential benefits or side effects, and most (n=129, 66.5%) had a neutral perception to risks associated with biologic use. There was no perception of biologics working differently between races/ethnicities. More (n=76, 62.8%) blacks preferred intravenous over subcutaneous modalities compared with whites (n=12, 37.5%) but were not as willing to pay as much out of pocket for it. Individuals with Medicare were significantly more likely to have been on biologics.
Conclusions: There are important similarities and differences between blacks and whites with lupus with respect to their perceptions of biologic therapies and their impact. There are opportunities to increase patient exposure to information about biologics and improve their understanding in order for them to make the best informed decision possible.
Keywords: biologics; disparities; patient reported outcomes; systemic lupus erythematosus.