资源有限国家血友病的管理

Y. Ayob
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引用次数: 5

摘要

血友病是一种罕见的先天性出血性疾病,需要终生治疗。患病率不受种族、民族或社会经济的影响。然而,与发达国家相比,在资源有限的国家确诊的血友病患者要少得多。管理需要许多发展中国家难以提供的替代疗法。虽然发达国家已经转向使用重组疗法,但许多发展中国家仍在努力为血友病患者提供血浆,更不用说血浆衍生的分离因子浓缩物了。财政拮据是造成这些差距的主要原因。这是可以理解的,因为传染病等更紧迫的公共卫生问题影响到更多的人口,需要更紧急的关注。然而,也有成功的例子。一些发展中国家能够通过其输血规划提供血浆,而一些国家则设法获得政府的支持,提供浓缩因子。制定管理协议以确保其有效使用。世界血友病联合会和各国血友病协会帮助将注意力集中到血友病患者身上,并提高对其病情管理的认识。强有力的领导和制定一项包括适当规划和实施的国家规划,可改善资源有限国家对血友病患者的护理,帮助他们充分发挥潜力,而不会成为这些国家的社会和经济负担。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Management of hemophilia in resource-limited countries
SUMMARY Hemophilia is a rare congenital bleeding disorder that requires lifelong treatment. Prevalence is not affected by race, ethnicity or socioeconomics. However, there are considerably fewer hemophiliacs diagnosed in resource-limited countries than in the developed world. Management requires replacement therapy that many developing countries find difficult to provide. While the developed world has moved to using recombinant therapy, many developing countries are struggling to provide plasma to the hemophiliacs, let alone plasma-derived fractionated factor concentrate. Financial constraint is the major cause of these disparities. This is understandable as more pressing public health issues such as infectious diseases affect a larger population and require more urgent attention. However, there have been successes. Some developing countries are able to provide plasma through their blood transfusion program while some managed to secure government support to provide factor concentrates. Management protocols are developed to ensure their effective use. The World Federation of Hemophilia and national hemophilia societies have helped focus attention to the hemophiliacs and increase awareness on the management of their condition. Strong leadership and the development of a national program that includes proper planning and implementation can bring about improvement in the care of hemophiliacs in resource-limited countries that would help them achieve their full potential and not be a social and economic burden to these countries.
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