Evaluating the psychosocial impact of hemophilia B: The Bridging Hemophilia B Experiences, Results and Opportunities into Solutions (B‐HERO‐S) study. (April 2017)

• Record Type: Journal Article
• Authors: Sidonio, Robert; Holot, Natalia; Cooper, David L.
• Is Part Of: European journal of haematology. Volume 98(2017)Supplement 86
• Page Start: 3
• Page End: 4
• Publication Date: 2017-04
• Subjects: hemophilia B -- pain -- psychosocial -- quality of life -- relationships; Hematology -- Periodicals; Blood -- Diseases -- Periodicals; Blood -- Periodicals; 616.15005
• DOI: 10.1111/ejh.12853
• Languages: English
• ISSNs: 0902-4441

Abstract

Abstract: The needs of individuals living with hemophilia B, especially those with mild or moderate hemophilia and affected females, are not well understood. The Bridging Hemophilia B Experiences, Results and Opportunities into Solutions (B‐HERO‐S) initiative was developed in an effort to obtain greater insights into the unique issues and challenges faced by those with hemophilia B. This study explored the impact of hemophilia B on education, employment, engagement in physical activities and other psychosocial aspects of the lives of affected individuals and their families. The B‐HERO‐S findings reveal a number of unmet needs in the hemophilia B population, and these results may be leveraged to inform patient outreach and education initiatives.