Socialization of Adult Men with Hereditary Bleeding Disorders and the Role of Spouse and Significant Other

The purpose of this pilot study is to characterize social integration of persons with congenital bleeding disorders (PWCBD), specifically adult males with hemophilia A or B. Due to early onset of bleeding symptoms, they are predisposed to acute, life-threatening bleeding, bleeding complications, risk for long-term disabling hemophilic arthropathy, and blood-borne infections. A European study has shown that adult males with hemophilia have inferior socialization as measured by work, work disability and health-related quality of life when compared to adult men in the general population. We hypothesize that a broader view of socialization components also contribute to quality of life. We also propose that the role of the spouse or significant other may have relevance for current social work goals in providing comprehensive care for adult PWCBD.