The Bridging Hemophilia B Experiences, Results and Opportunities Into Solutions (B-HERO-S) initiative was launched in an effort to address specific gaps in the understanding of the psychosocial impact of mild-moderate-severe hemophilia B. The original Hemophilia Experiences, Results and Opportunities (HERO) qualitative study evaluated the needs of people with hemophilia A or B in multiple countries; however, a majority of participants had the more common moderate-severe hemophilia A. The B-HERO-S study was designed in collaboration with the hemophilia community to evaluate the needs of adults with hemophilia B and caregivers of children with hemophilia B, including affected women and caregivers of girls with hemophilia. The report presented here describes participant demographics and comorbidities, as well as treatment regimens and access to treatment. Bleeding symptoms were reported by 27% of mothers of children with hemophilia B who participated. Women were more likely than men to self-report arthritis and depression/anxiety as comorbidities associated with hemophilia B. More adults and children with hemophilia B were on routine treatment than on on-demand treatment, and a high percentage of adults with moderate hemophilia B received routine treatment (86%). Many adults with hemophilia B (78%) and caregivers (69%) expressed concern about access to factor in the next 5 years, and of adults with hemophilia B, women more commonly experienced issues with access to factor in the past than did men (72% vs 44%). The findings of the B-HERO-S study reveal potential unmet needs of some patients with mild-moderate hemophilia B, and the results may be leveraged to inform patient outreach by hemophilia treatment centers and education initiatives. K E Y W O R D Saccess, comorbidities, demographics, factor IX, hemophilia B

Data on the health-related quality of life (HRQoL) of congenital haemophilia patients with inhibitors (CHwI) and their caregivers are limited. To understand the association between patient demo-graphics/clinical characteristics with HRQoL among CHwI patients and caregivers, a survey was developed to assess HRQoL with haemophilia-specific QoL questionnaires (HAEMO-QoL/HAEM-A-QoL). In the cross-sectional study, paper-pencil questionnaires were mailed to 261 US CHwI patients/caregivers in July 2010. Descriptive analyses were performed to characterize HRQoL by age and to identify drivers of impairment, from both patient/caregiver perspectives. HRQoL scores were transformed on a scale of 0-100, with higher scores indicating higher impairment in HRQoL. Ninety-seven respondents completed the HRQoL assessment. HRQoL impairment was higher in adult patients. In children ages 8-16 years, mean HAEMO-QoL total score was 33.8 (SD = 15.5), and 35.0 (SD = 16.1) in children ages 4-7 years; for adult patients the mean HAEM-A-QoL total score was 42.2 (SD = 14.8). Adults reported highest impairment in the 'sports/leisure' subscale (Mean = 62.5, SD = 18.7), whereas patients 8-16 years reported highest impairment in the 'physical health' subscale (Mean = 50.8, SD = 30.5).Caregivers of patients ages 4-7 years reported greatest impairment within the 'family' subscale (Mean = 55.6, SD = 19.4). Caregivers were ''considerably/very much'' bothered by their child's inhibitors and reported higher QoL impairment for their child than parents who were not bothered. Within ChwI patients, HRQoL impairments increased with age and existed across a range of physical/psychosocial domains. In addition, caregiver burden also affected the perceived HRQoL of paediatric CHwI patients. Additional research is considered necessary to further understand the support caregivers need while caring for children with CHwI.

The psychosocial impact of hemophilia on work was recently investigated in the Hemophilia Experiences, Results and Opportunities (HERO) study. The findings revealed that hemophilia had an impact for adults with moderate/severe hemophilia and caregivers of children with hemophilia. HERO did not specifically evaluate impact on education in adults/ children with mild/moderate hemophilia or the impact on employment of spouses/partners of caregivers of affected children. The Bridging Hemophilia B Experiences, Results and Opportunities into Solutions (B-HERO-S) study evaluated the impact of hemophilia on the lives of adult men/women with mild-severe hemophilia B and caregivers of boys/girls with hemophilia B and their spouses/partners. Many adults with hemophilia B (94%) reported that hemophilia had a negative effect on their ability to complete a formal education, often attributed to the inability to attend or concentrate in school as a result of hemophilia-related bleeding or pain. Most adults with hemophilia B (95%) and caregivers/ partners (89%/84%) indicated that hemophilia had a negative impact on employment.Most adults with hemophilia were employed (81%), with construction/manufacturing (35%) as the most frequently reported industry; many worked in jobs requiring manual labor (39%). Of those unemployed, 62% never worked, and those who stopped working reported that they left the workforce due to financial issues (59%), including insurance coverage/co-pays, or hemophilia-related issues (55%). Nearly one-third of caregivers voluntarily left the workforce to care for children with hemophilia. These results suggest a need to focus more effort on career counseling for adults with hemophilia B and caregivers of affected children, especially around mild/moderate hemophilia, as this population may not be as well informed regarding potential impact in school and the workplace. K E Y W O R D Seducation, employment, hemophilia B

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Young adults with hemophilia face unique challenges during the transition to adulthood, including issues associated with switching from pediatric to adult hematology care, building mature interpersonal relationships, and establishing an independent career with an assurance of medical insurance coverage. A greater understanding of these challenges is essential for developing effective strategies to address the specific needs of this population. These challenges may be differentiated from those of older adults with hemophilia in large part because of more extensive childhood prophylaxis and safer factor products, resulting in fewer joint problems and lower rates of HIV and HCV infections. This analysis of the changing nature and unmet needs of today's young adults entering into adult hemophilia treatment centers, as well as potential strategies for optimally addressing these needs, was developed following roundtable discussions between patients, caregivers, hematologists, and other health care professionals participating in comprehensive care. Challenges identified among young adults with hemophilia include psychosocial issues related to maturity, personal responsibility, and increased independence, as well as concerns regarding when and with whom to share information about one's hemophilia, limited awareness of educational and financial resources, and a low perceived value of regular hematology care. The initiatives proposed herein highlight important opportunities for health care professionals at pediatric and adult hemophilia treatment centers, as well as national organizations, community groups, and career counselors, to address key unmet needs of this patient population. Am. J. Hematol. 90:S17–22, 2015. © 2015 Wiley Periodicals, Inc.