Hemophilia and sexual health: results from the HERO and B-HERO-S studies

BACKGROUND: Sexual health plays a primary role in quality of life (QoL) for many people, including those with hemophilia; however, there is little information available about sexual relationships and satisfaction in patients with hemophilia. METHODS: To address this issue, the Hemophilia Experiences, Results and Opportunities (HERO) and the Bridging Hemophilia B Experiences, Results and Opportunities into Solutions (B-HERO-S) studies included questions from the Male Sexual Health Questionnaire (MSHQ). RESULTS: Although these data were not statistically analyzed for comparisons between the 3 populations (HERO, HERO US only, and B-HERO-S), in general, participants in the HERO survey appeared to be more satisfied with their sexual relationship than participants in the B-HERO-S survey. In addition, many patients, especially those outside the United States, reported that they had not discussed sexual health with their doctor or other members of the hemophilia treatment center team. While the topic of sexual health has been infrequently explored in men with hemophilia, this is the first time it has been investigated in women with hemophilia. CONCLUSION: The results of these studies demonstrate that the impact of hemophilia extends to intimacy and suggest the need for large-scale studies in additional countries to explore further the factors associated with sexual health issues in people with hemophilia.