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发展中世界的血友病:巴西的经验

Haemophilia in the developing world: the Brazilian experience.

作者信息

Antunes S V

机构信息

Federal University of São Paulo, Hematology and Transfusion Medicine Service.

出版信息

Haemophilia. 2002 May;8(3):199-204. doi: 10.1046/j.1365-2516.2002.00638.x.

Abstract

The success of haemophilia treatment is based on well-established criteria, and the use of clotting factor concentrates is fundamental. These strategies are seen in the developed world when measures of quality of life are studied or when disabilities are evaluated among haemophilic patients. At the same time, countries in the developing world, with almost 80% of the haemophilia population, are making tremendous efforts to change their diagnosis and treatment methods, in order to improve their healthcare and therefore be able to promote better life for haemophiliacs. However, these goals are threatened when there are many social needs and few economic resources. There is wide variation in conditions in these countries, depending on what has already been done, how many patients the country has, how the blood banking services are planned and obviously, what are the interested parties. Even with so many difficulties, there are ways to work towards and reach the most important goal, which is to prepare the haemophiliacs to be citizens that are as productive and capable of working as are the nonhaemophiliacs. Each country has to take its part; the commitment of the community, physicians and government will be needed to design a model that is compatible with all the necessities and possibilities, and is understood by all the persons involved.

摘要

血友病治疗的成功基于既定标准,凝血因子浓缩物的使用至关重要。在发达国家,当研究生活质量指标或评估血友病患者的残疾情况时,就能看到这些策略。与此同时,占血友病患者近80%的发展中国家正在做出巨大努力来改变其诊断和治疗方法,以改善医疗保健,从而能够为血友病患者创造更好的生活。然而,当社会需求众多而经济资源稀缺时,这些目标就会受到威胁。这些国家的情况差异很大,这取决于已经做了什么、国家有多少患者、血库服务如何规划,显然还取决于相关方是谁。即便困难重重,仍有办法朝着并实现最重要的目标,即让血友病患者成为能像非血友病患者一样有生产力且能工作的公民。每个国家都必须尽自己的一份力;需要社区、医生和政府的共同努力,来设计一个符合所有需求和可能性且为所有相关人员所理解的模式。

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