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我国β地中海贫血疾病负担及卫生服务利用现状

Progress in researches on disease burden and health service utilization of beta-thalassemia patients in China

  • 摘要: 地中海贫血(thalassaemia)是一种遗传性血红蛋白病,临床上主要分为α地中海贫血和β地中海贫血。重度β地中海贫血患者通常在婴儿期就会出现贫血症状并逐渐恶化,需要长期进行输血才能维持生命,严重影响患者生命质量,并给社会、患者及其家庭带来沉重的经济和精神负担,是世界卫生组织(World Health Organization, WHO)关注的全球公共卫生问题之一。为完善我国地中海贫血防控管理和提升卫生服务能力提供参考,本文系统地概述了我国β地中海贫血流行病学负担、疾病负担及卫生服务利用现状。

     

    Abstract: Thalassemia is an inherited hemoglobin disorder clinically categorized into alpha and beta thalassemia. Severe beta - thalassemia patients commonly experience anemia during infancy and progressively deteriorate, necessitating long - term blood transfusion to sustain life. The reliance on the blood transfusion significantly diminishes the quality of life of the patients, thereby imposing substantial economic and psychological hardships not only on the disease sufferers but also on the patients' families and the society as a whole. Thalassemia is considered as one of the global public health concerns by World Health Organization. In the paper, we summarize researches on epidemiological and disease burden of β - thalassemia and health service utilization of β - thalassemia patients in China.

     

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