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血友病早期治疗的障碍及认知局限

Barriers and perceived limitations to early treatment of hemophilia.

作者信息

Saxena Kapil

机构信息

Boston Hemophilia Center, Boston Children's Hospital, Boston, MA, USA.

出版信息

J Blood Med. 2013 May 16;4:49-56. doi: 10.2147/JBM.S43734. Print 2013.

Abstract

Early treatment of bleeds in hemophilia patients, both with and without inhibitors, has been shown to be of immense benefit in the overall clinical outcome. Despite the advantages of treating the bleeding episodes early, significant barriers and limitations remain. The aim of this review is to highlight the various barriers and perceived limitations to early therapy of bleeding episodes, especially in patients who have developed inhibitors to factor VIII. The peer-reviewed literature was searched for articles on hemophilia patients, with and without inhibitors, and early treatment, to identify the barriers to early treatment and potential impact on patient outcomes. The most important barrier is the educational barrier, which involves lack of awareness among patients regarding the signs of a bleed, as well as importance of early therapy. It is also common for parents or caregivers of school-age children to exhibit inconvenience and scheduling barriers. Distance to the treatment center can also play a role here. Some patients experience financial barriers related to cost of clotting factor products, insurance coverage, or insurance caps and out-of-pocket costs. Rarely, there can also be problems related to venous access or home infusion. Lastly, multiple psychosocial barriers can prevent adherence to treatment regimens. Identification and addressing these individual barriers will result in improved compliance rates, prevent joint damage, be more cost-effective, and lead to better overall health of these patients.

摘要

血友病患者出血的早期治疗,无论有无抑制物,已被证明对整体临床结局有巨大益处。尽管早期治疗出血发作有诸多优势,但仍存在重大障碍和限制。本综述的目的是强调出血发作早期治疗的各种障碍和公认的限制,特别是在已产生针对凝血因子 VIII 抑制物的患者中。检索经过同行评审的文献,查找有关有或无抑制物的血友病患者及早期治疗的文章,以确定早期治疗的障碍以及对患者结局的潜在影响。最重要的障碍是教育障碍,这包括患者对出血迹象以及早期治疗重要性缺乏认识。学龄儿童的父母或照顾者表现出不便和时间安排障碍也很常见。到治疗中心的距离在此也可能起作用。一些患者会遇到与凝血因子产品成本、保险覆盖范围、保险限额和自付费用相关的经济障碍。很少情况下,还可能存在与静脉通路或家庭输注相关的问题。最后,多种社会心理障碍会妨碍对治疗方案的依从性。识别并解决这些个体障碍将提高依从率、预防关节损伤、更具成本效益,并使这些患者的整体健康状况更好。

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