提高血友病A患者生活质量的干预模式

An intervention model for improving the life quality of patients with hemophilia A

目的:提高血友病A患者的生活质量,降低其残疾率。方法:培训专业技术人员,建立血友病A登记制度,制定血友病A干预方案,随机选择162例血友病A患者进行输血后传染病流行病学调查研究。结果:培训专业技术人员112人次,登记血友病A患者561人,162例血友病A患者输血后抗-HCV、HBsAg、抗-HIV、梅毒抗体阳性率和ALT异常率分别为20.37%、4.32%、0、0和8.64%。1996～2000年较1992～1995年相应指标有明显降低,与干预措施相平行。结论:本干预模式简便易行,行之有效,便于推广,有效提高了血友病A患者的生活质量。

Objective: To improve the life quality of patients with hemophilia A and decrease the frequency of deformity. Methods: The whole protocal consists of training hemophilia counselors, establishing the register of patients with hemophilia A, working out for interference approaches, randomly selecting 162 patients with hemophilia A and surveying transfusion relative infectious disease. Results: 112 technicians were trained, 561 patients with hemophilia A were registered in Shandong Province. The positive rates of anti-HCV, HBsAg, anti-HIV and syphilis antibody in 162 patients with hemophilia A were 20.37%?4.32%?0.00%?0.00%, respectively. The abnormal rate of ALT in 162 patients with hemophilia A was 8.64%. The results of the positive rates and abnormal rate in 1996～2000 were significantly more decreased than those in 1992～1995. Conclusion: This protocol is simple, effective, easy to be popularized and can greatly improve the life quality of patients with hemophilia A.