Sidonio Robert, Holot Natalia, Cooper David L
Emory University and Children's Healthcare of Atlanta, Atlanta, GA, USA.
Novo Nordisk Inc., Plainsboro, NJ, USA.
Eur J Haematol. 2017 Apr;98 Suppl 86:3-4. doi: 10.1111/ejh.12853.
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.
患有乙型血友病的个体的需求，尤其是那些患有轻度或中度血友病的个体以及受影响的女性的需求，尚未得到充分了解。“将乙型血友病的经历、结果和机会转化为解决方案”（B-HERO-S）倡议的制定，旨在更深入地了解乙型血友病患者所面临的独特问题和挑战。本研究探讨了乙型血友病对受影响个体及其家庭生活中的教育、就业、体育活动参与以及其他心理社会方面的影响。B-HERO-S的研究结果揭示了乙型血友病患者群体中一些未得到满足的需求，这些结果可用于为患者宣传和教育倡议提供信息。
