B-HERO-S Study Highlights Psychosocial Issues in Boys and Girls with Mild-Severe Hemophilia B

B-HERO-S Study reports on the psychosocial impact of Hemophilia B on affected boys and girls and their families

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 (CGs).   Results of the B-HERO-S study presented recently at the 2016 World Congress of the World Federation of Hemophilia (WFH) highlight the psychosocial impact experienced by children with hemophilia (CWH) and those who care for them. A total of 150 CGs of CWH (<18 years) were recruited to complete surveys from September 26, 2015 to November 3, 2015. Data was collected for 150 CGs (median age 35 years, 23% male, 77% female) of CWH (median age 10 years, 81% boys, 19% girls). Of the 150 CWH, 18% were classified as mild, 56% were moderate, 22% were severe, and 4% had inhibitors.

Caregivers reported that 55% of their oldest children less than 18 years of age with hemophilia received treatment with recombinant factor IX products at some point in their life, while 40% received plasma derived factor IX products at some point. Most (65%) CWH were on some form of routine factor infusions to prevent bleeding varying from once or twice a month to a few times a week with additional doses before activity. Looking by severity, 18-31% of CWH with mild or moderate hemophilia and 75% with severe hemophilia received routine factor infusions for more than half of their lifetime. Factor infusions were given by care giver or CWH about 73% of the time compared to 27% of infusions given by a nurse at home or at HTC. Most (90%) CGs reported easy access to HTCs. About half of the CGs of CWH had difficulties obtaining factor products or concerns about availability or affordability of factor during the past 5 years, and more were concerned about access in the next 5 years.  

This study also provided insights into the impact of hemophilia on activities in CWH. Nearly all CWH had experienced a very large or moderate negative impact of hemophilia on participation in activities. The top five current activities for CWH were walking; swimming, bicycling, jogging/running, and martial arts and the top 5 desired activities in which children were unable to participate were football, basketball, soccer, tennis, and skateboarding. Almost half of CWH stopped participating in a past activity because of a risk of injury due to contact with other athletes and almost one-third stopped due to a fear of joint bleeding during the activity. The results showed that most CWH were not engaging in high risk activities but they were actively engaged in lower-risk activities. More than half of CWH required moderate changes to treatment (e.g. dosing change or increased frequency) or significant changes (e.g. starting routine treatment) to accommodate activities, and the results suggest that treatment changes may have been needed in patients with mild-moderate hemophilia to accommodate participation in even normal activities of low or moderate vigorousness.

Caregivers also provided some insights into challenges of caring for a CWH. Work was impacted for most CGs (89%) and their partners (84%), including CGs of CWH with mild-moderate hemophilia. Furthermore, about one-third of CGs have voluntarily left their job to care for a child with hemophilia.  


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