Cutter Susan, Molter Don, Dunn Spencer, Hunter Susan, Peltier Skye, Haugstad Kimberly, Frick Neil, Holot Natalia, Cooper David L
Hospital of the University of Pennsylvania, Philadelphia, PA, USA.
Indiana Hemophilia and Thrombosis Center, Indianapolis, IN, USA.
Eur J Haematol. 2017 Apr;98 Suppl 86:18-24. doi: 10.1111/ejh.12851.
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.
血友病对工作的社会心理影响最近在血友病经历、结果与机会（HERO）研究中得到了调查。研究结果显示，血友病对患有中度/重度血友病的成年人以及血友病患儿的照料者产生了影响。HERO研究并未专门评估对患有轻度/中度血友病的成年人/儿童的教育影响，也未评估对受影响儿童照料者的配偶/伴侣就业的影响。将B型血友病经历、结果与机会转化为解决方案（B-HERO-S）研究评估了血友病对患有轻度-重度B型血友病的成年男性/女性以及B型血友病男孩/女孩的照料者及其配偶/伴侣生活的影响。许多患有B型血友病的成年人（94%）报告称，血友病对他们完成正规教育的能力产生了负面影响，这通常归因于因血友病相关的出血或疼痛而无法上学或集中精力学习。大多数患有B型血友病的成年人（95%）以及照料者/伴侣（89%/84%）表示，血友病对就业产生了负面影响。大多数患有血友病的成年人有工作（81%），其中建筑/制造业（35%）是最常报告的行业；许多人从事需要体力劳动的工作（39%）。在失业者中，62%从未工作过，而那些停止工作的人报告称，他们离开劳动力市场是由于经济问题（59%），包括保险覆盖范围/自付费用，或与血友病相关的问题（55%）。近三分之一的照料者自愿离开劳动力市场去照顾患有血友病的儿童。这些结果表明，需要更加努力地为患有B型血友病的成年人以及受影响儿童的照料者提供职业咨询，尤其是围绕轻度/中度血友病，因为这一人群可能对在学校和工作场所的潜在影响了解不足。
