Abstract
Objective Recognizing and addressing health disparities in systemic lupus erythematosus (SLE) is important given it disproportionately affects women and racial/ethnic minorities. This study aimed to identify key barriers to equitable health outcomes in SLE and propose solutions to alleviate these disparities.
Methods A US-based expert panel (comprising three rheumatologists, two health policy experts, a patient advocate with SLE, and a social scientist specializing in health disparities research) was chosen using purposeful sampling to ensure diverse and comprehensive perspectives. Discussion was facilitated by a trained moderator, using topic guides focused on known barriers to health equity in SLE, identified through an eight-country analysis. Discussions were transcribed and consensus was reached through iterative dialogue. Validity and reliability measures, including member checking and reflexivity, were embedded throughout the process.
Results Several barriers to equitable health outcomes in SLE were identified, including: a notable gap in access to rheumatologists and other specialists; socioeconomic factors influencing the quality of care; systemic biases in healthcare; and communication barriers between patients and providers. Proposed solutions to these included: enhancing access to specialists by addressing affordability, such as through telemedicine; implementing models of value-based care, such as accountable care organizations and patient-centered medical homes, that consider social determinants of health; and educating healthcare providers on communication barriers and other biases experienced by patients from diverse backgrounds. The panel acknowledged potential challenges of these solutions, including logistical difficulties and the need for significant shifts in attitudes and behaviors.
Conclusions The complex factors underlying health disparities in SLE necessitate multilayered strategies to promote health equity. Proposed solutions such as improved patient education, cultural tailoring of interventions, and policy changes to increase access may be promising, but require substantial resources and systemic reform. Our insights suggest that it is important to not generalize amongst minorities, and create solutions that address concerns specific to the population being considered. While the contributors here were US-based, the learnings are globally applicable, and emphasize the need for ongoing research and advocacy initiatives to address health inequities in SLE and ensure optimal outcomes for all patients. Further investigation into actionable and evidence-based recommendations is warranted.
Acknowledgements Funded by UCB Pharma and Biogen Inc. Medical writing support provided by Costello Medical and funded by UCB Pharma and Biogen Inc. Members of the panel were compensated by UCB Pharma and Biogen Inc. for their participation.
Disclosures DF: Employee of UCB Pharma; JGR: Employee and shareholder of Biogen Inc.; MN: Employee and shareholder of Biogen Inc.; GS: Employee and shareholder of UCB Pharma.
