Race, Ethnicity, and Hemophilia: A Scoping Review

Hemophilia is a rare bleeding disorder whose population is becoming more racially and ethnically diverse. However, a comprehensive review of race, ethnicity, and hemophilia has not been published. Thus, we conducted a scoping review of race and ethnicity across the hemophilia care continuum. PubMed, Embase, and Medline were searched for articles published between 1970 and 2024 using the terms: hemophilia or haemophilia, race, racial, ethnicity, ethnic, Caucasian, Black, African American, Hispanic, and Latino. Excluded were case reports, commentaries, reviews, conference abstracts, and studies not reporting race-or-ethnicity-specific results. Of the 38 included studies, most (n = 33) were conducted in the United States (US). Nearly 80% of studies examined inhibitor development (n = 13), a major complication that can develop or outcomes (n = 17), with fewer studies on diagnosis (n = 3) or treatment (n = 5). Inhibitor risk was consistently higher in Black and Hispanic vs. White people with hemophilia. Black people with hemophilia had worse physical functioning, though findings for treatment adherence and mortality were mixed. Within specialized treatment centers, hemophilia prevalence was slightly greater in White (15.1 per 100,000) vs. Black or Hispanic men (12.4 per 100,000). Overall, this review found consistent disparities in inhibitor risk and physical outcomes in Black and Hispanic vs. White people with hemophilia. There were fewer studies and less consistent findings on hemophilia care and outcomes. Most were conducted in the US, limiting global generalizability. Future studies examining race, ethnicity, and hemophilia diagnosis, treatment, and outcomes globally are needed to inform optimal care of a growing and diverse population.