Sexual Health in Patients with Hemophilia;

The Insights from the Patient Reported Outcomes, Burdens and Experiences (PROBE) Study

ASH 2017 (Atlanta, GA, December 9-12): Sexual health in patients with hemophilia (PWH) is inadequately evaluated during   routine care. The aim of this study was to evaluate the impact of hemophilia on sexual health in PWH compared with those without a bleeding disorder using PROBE, a 29-item questionnaire evaluating patient reported outcomes in hemophilia. Sexual health was measured using the question asking whether participants have difficulty with sexual intimacy (yes or no). The overall health status (PROBE score) was assessed among patients with and without a sexual health problem.

Of 807 respondents, 551 had hemophilia (Heme A: 475; Heme B 76) and 256 people did not have a bleeding disorder. The median age was 33 years in hemophilia group and 43 years in people without a bleeding disorder. Seventy-six percent were male. A significantly greater proportion of PWH (14.3%) reported difficulty with sexual intimacy compared to participants without bleeding disorders (6.25%). Patients who bled more than 10 times in the past year, who bled in the past two weeks, who had limit range of motion of any joints and life- or limb-threatening bleeding in the past year had significantly more difficulty with sexual intimacy. Other predictors for poor sexual health included older age, greater than 10 bleeds or life/limb-threatening bleeds in the past year. Patients who reported difficulty in sexual intimacy has significantly higher total PROBE score, indicating worse general health status comparing to those who did not report issues with intimacy.

The prevalence of difficulty with sexual activity is significantly higher among PWH as compared to general population. Older age, joint bleeding and joint status are related to poor sexual health in PWH. In addition, poor sexual health is strongly associated with worse general health status. Sexual health should be assessed as a routine care in adult PWH.