Buckner Tyler W, Witkop Michelle, Guelcher Christine, Frey Mary Jane, Hunter Susan, Peltier Skye, Recht Michael, Walsh Christopher, Kessler Craig M, Owens Wendy, Clark David B, Frick Neil, Rice Michelle, Iyer Neeraj N, Holot Natalia, Cooper David L, Sidonio Robert
University of Colorado School of Medicine, Aurora, CO, USA.
Munson Medical Center, Traverse City, MI, USA.
Eur J Haematol. 2017 Apr;98 Suppl 86:5-17. doi: 10.1111/ejh.12854.
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.
“将B型血友病的经历、结果和机会转化为解决方案（B-HERO-S）”倡议的发起，旨在解决在理解轻度-中度-重度B型血友病的心理社会影响方面存在的特定差距。最初的“血友病经历、结果和机会（HERO）”定性研究评估了多个国家中A型或B型血友病患者的需求；然而，大多数参与者患的是更常见的中度-重度A型血友病。B-HERO-S研究是与血友病群体合作设计的，旨在评估B型血友病成年患者以及B型血友病儿童的照料者的需求，包括受影响的女性和血友病女童的照料者。此处呈现的报告描述了参与者的人口统计学特征和合并症，以及治疗方案和治疗可及性。参与研究的B型血友病儿童的母亲中有27%报告了出血症状。女性比男性更有可能自我报告关节炎以及与B型血友病相关的抑郁/焦虑作为合并症。接受常规治疗的B型血友病成人和儿童比按需治疗的更多，并且中度B型血友病的成年患者中有很高比例接受常规治疗（86%）。许多B型血友病成年患者（78%）和照料者（69%）对未来5年的凝血因子可及性表示担忧，在B型血友病成年患者中，女性过去比男性更常遇到凝血因子可及性问题（72%对44%）。B-HERO-S研究的结果揭示了一些轻度-中度B型血友病患者潜在的未满足需求，这些结果可用于为血友病治疗中心的患者宣传和教育倡议提供信息。
