B-HERO-S Study Highlights Psychosocial Issues in Men and Women with Hemophilia B

B-HERO-S Study reports on the impact of Hemophilia B on Men and Women with Hemophilia B on Education, Work and Activities

WFH 2016 (Orlando, July 24-28): The Bridging Hemophilia B Experiences Results and Opportunities into Solutions (B-HERO-S) study was designed in collaboration with US health care professionals, 3 US-based advocacy organizations, patients, and caregivers to better understand difficulties and psychosocial issues impacting patients with mild, moderate, or severe hemophilia B and their caregivers. The study has discovered many unique challenges faced by adult PWH and results were recently presented at the 2016 World Congress of the World Federation of Hemophilia (WFH). Data was collected for 299 adult PWH (median age 29 years, 71% male, 29% female).  

Almost all (94%) adult PWH experienced a negative impact on their education, and the most common reasons reported were difficulty concentrating in school due to bleeds or pain, difficulty attending school due to mobility issues, and hemophilia-related absences . Nearly all adult PWH (95%) reported a negative impact on their working life, as well. Of those surveyed, 81% of PWH were employed and more than half of PWH who were not employed had never worked in their life. Of those who had previous employment, more than half had stopped due to hemophilia-related financial issues and disease complications.   

Nearly all PWH reported a negative impact of hemophilia on their recreational activities. A moderate to large impact was reported by 91% of PWH who were receiving routine infusions (once or twice a month up to two or more times a week). Adult patients with hemophilia commonly don’t participate in activities because of a fear or risk of bruising, or muscle or joint bleeding.  The most common current activities for PWH included walking, dancing, fishing, and bicycling. However, their top five desired activities in which they were unable to participate were basketball, football, skiing, soccer, and surfing. Many moderate to riskier activities (eg. hockey, football, soccer) were stopped after middle or high school, and some of the adults reported history of joint and/or muscle bleeds and/or head injury associated with activities. Most adult PWH reported that they adjust their treatment regimen (e.g. starting prophylaxis, adding additional doses, changing the amount or timing of doses) to be able to participate in activities, with severe hemophilia patients making more adjustments.

 

The B-HERO-S Study (NCT02568202) was sponsored by Novo Nordisk Inc.