Perspectives on Lyme disease among persons of color in the United States: Qualitative research findings

Objective(s) Lyme disease is the most common vector-borne illness in the United States, with an estimated 476,000 cases diagnosed and treated annually. Although incidence is highest among White individuals, people of color are more likely to experience severe or disseminated manifestations. This study explored factors contributing to this disparity by examining experiences of people of color diagnosed with Lyme disease. Setting Participants resided in high-incidence U.S. states. Participants Self-identified people of color diagnosed with Lyme disease within the past 12 months. Methods Fifteen participants completed in-depth interviews analyzed using inductive and deductive qualitative content analysis. Follow-up focus groups supported consensus-building and thematic refinement. Results Key themes included limited awareness that people of color are at risk for Lyme disease, perceived discrimination in health care encounters, diagnostic delays attributed to the characteristic erythema migrans (EM) rash being less visible on darker skin, and insufficient physician knowledge regarding diverse clinical presentations. Participants also expressed a preference for racially concordant providers. Lyme disease affected physical health, emotional well-being, social relationships, and engagement in outdoor activities. Conclusions People of color may face distinct challenges in Lyme disease recognition and management, contributing to disparities in outcomes. Findings underscore the need for targeted education for at-risk populations, patients and providers and for equitable prevention and diagnostic strategies.