A new study is helping shed light on how healthcare providers and hemophilia treatment centers can best serve and support the hemophilia B community. Supported by Novo Nordisk, the Bridging Hemophilia B Experiences, Results and Opportunities into Solutions (B-HERO-S) study comes on the heels of the company’s 2014 international HERO study. Like its precursor, the goal of the B-HERO-S online survey was to gather information on quality-of-life issues affecting individuals and families coping with hemophilia. However, the sole focus of B-HERO-S was hemophilia B, or factor IX (FIX) deficiency.
The main sections in the survey were management of the disorder, engagement in activities and impact on education and work.
Hemophilia B Management issues
- The survey found 79% of adults with hemophilia B were on routine infusions.
- More than 2/3 of caregivers reported their child had experienced a bleed in the previous month. “It’s much higher than what we would want to see,” says Tyler Buckner, MD, MSc, of the University of Colorado Hemophilia and Thrombosis Center in Aurora.
- The median number of bleeds reported in adults in the previous year was four, which is similar to what Buckner sees in the clinic.
Recreational activities
- 98% of adults and 90% of caregivers—reported that hemophilia B has a negative impact on their ability to engage in recreational activities.
- The top two recreational activities for kids were walking and swimming; for adults, it was walking and dancing.
- A majority of caregivers rated four of their kids’ top-five activities as low-intensity. Previous studies have shown that kids with hemophilia need to build bone density throughout childhood by participating in weight-bearing activities. “Given that the median age for kids came out at 10, I would expect more physical activity than just walking,” says Kim Baumann, MPT, of the Center for Bleeding and Clotting Disorders at the University of Minnesota Health in Minneapolis.
Impact on education and work
- 94% of students and 95% of workers indicated hemophilia B has a negative impact on education and work.
- More than 2/3 of students said their bleeding disorder interfered with concentration.
- 59% of adults received work-related advice from their providers, and most frequently by a hematologist. “That’s more evidence that a comprehensive care clinic is one of the many benefits of such a relationship with hemophilia providers,” Buckner says.
Pain and depression
- Almost 1 out of 3 respondents reported acute pain; 13% had chronic pain.
- About 50% of caregivers reported feelings of mild depression and mild anxiety, with women more likely than men to report such feelings. “Depression exists as a problem in our patient populations,” Buckner says. “It’s something we need to address and make sure it is not ignored.”
What’s next?
“We need to get refocused on not just reducing bleeding, but also improving quality of life,” says Buckner. Addressing mental health issues and pain management are two priorities, he says. “I see the B-HERO-S survey as yet another call to continued action in all these areas.”