II. Medizinische Klinik und Poliklinik, Gerinnungsambulanz und Hämophiliezentrum, Universitätsklinikum Hamburg-Eppendorf, Hamburg, Germany.
II. Medizinische Klinik und Poliklinik, Gerinnungsambulanz und Hämophiliezentrum, Universitätsklinikum Hamburg-Eppendorf, Hamburg, Germany.
Thromb Res. 2014 Nov;134 Suppl 1:S53-6. doi: 10.1016/j.thromres.2013.10.012. Epub 2014 Apr 13.
The impact of haemophilia and its treatment on social status has not been well studied, although research into the quality of life of patients with haemophilia has shed some light on aspects of social and role functioning. Studies conducted before the advent of safe and effective coagulation factor replacement therapy suggest that the haemophilia population was predominantly of low socioeconomic status with many social disadvantages, including high rates of disability and unemployment and low rates of marriage. Since the availability of purified factor VIII concentrates that could be used in a home-care setting and as prophylaxis, most research suggests that social status and well-being amongst children, adolescents, and adults with haemophilia is not compromised, and is comparable to that of the general population. Children and adolescents with haemophilia do not generally feel disadvantaged, although haemophilia-related issues at school and amongst peer groups do arise. Recent studies in adults show higher than average rates of marriage and cohabitation and the attainment of a generally good educational status, but, as in the past, employment rates remain comparatively lower. Social status amongst the elderly with haemophilia who may have developed severe disability as a result of their condition is poorly defined and has never been formally studied. Additional research is recommended.
血友病及其治疗对社会地位的影响尚未得到充分研究，尽管对血友病患者生活质量的研究揭示了社会和角色功能的某些方面。在安全有效的凝血因子替代治疗出现之前进行的研究表明，血友病患者主要来自社会经济地位较低的人群，他们面临许多社会劣势，包括残疾和失业率高，结婚率低。自可在家中使用的纯化因子 VIII 浓缩物和预防性治疗可用以来，大多数研究表明，血友病儿童、青少年和成人的社会地位和幸福感并未受到影响，与普通人群相当。血友病儿童和青少年通常不会感到处于不利地位，尽管在学校和同龄人中确实会出现与血友病相关的问题。最近对成年人的研究表明，他们的结婚率和同居率以及普遍良好的教育程度都高于平均水平，但与过去一样，就业率仍然相对较低。由于病情而导致严重残疾的老年血友病患者的社会地位定义不明确，从未进行过正式研究。建议开展更多研究。
