摘要
血友病是由于机体缺乏因子Ⅷ(FⅧ)或因子Ⅸ(FⅨ)性染色体连锁的隐性遗传性出血性疾病。应用凝血因子替代治疗后,血友病患者的病情及社会功能有了明显改善。目前血友病患者生活质量(QoL)在研究中备受关注。世界卫生组织定义生活质量不仅包括个人幸福感,还包括对身体功能、情感、精神、社会行为和生活方面的满意度。在此总结分析了六个血友病生活质量特异性测评工具。目前这些工具在临床应用上显示了良好的性能,但仍有待进一步完成问卷心理测试特征和跨文化背景的有效性研究。
Hemophilia is an X-linked hereditary bleeding disorder caused by deficiency of coagulation factor Ⅷ or faetorIX. Replacement therapy with clotting Ⅷ or IX has improved the medical and social situation of patients with hemophilia. Quality of life（QoL） is a recent focus of research in haemophilia. It can be defined in analogy to the World Health Organization（WHO） definition of health as patient-perceived well being and function in terms of physical, emotional, mental, social and behavioral life domains. Here is to summarize the development of six new disease-specific measures of health-related quality of life, which have shown good performanee in clinical application, while further research is in progress to complete the psychometric testing and cross-eultural validation.
出处
《医学综述》
2012年第14期2234-2236,共3页
Medical Recapitulate
关键词
血友病
生活质量
测评工具
Hemophilia
Quality of life
Assessment tools
