Evaluating the psychosocial impact of hemophilia B: The Bridging Hemophilia B Experiences, Results and Opportunities into Solutions (B-HERO-S) study.
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.
Emory University and Children's Healthcare of Atlanta, Atlanta, GA, USA.
Robert
R
Sidonio
Novo Nordisk Inc., Plainsboro, NJ, USA.
Natalia
N
Holot
Novo Nordisk Inc., Plainsboro, NJ, USA.
David L
http://orcid.org/0000-0002-4499-1526
DL
Cooper
D002986:Clinical Trials as Topic; D015444:Exercise / Q000523:psychology*; D005260:Female; D002836:Hemophilia B / Q000503:physiopathology / Q000523:psychology*; D006801:Humans; D008297:Male; D010353:Patient Education as Topic; D011788:Quality of Life / Q000523:psychology*; D012959:Socioeconomic Factors
hemophilia B; pain; psychosocial; quality of life; relationships