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目的:探讨不同属地重型血友病患儿的治疗现况和生存现况。方法:以电话回访的形式调查我院近10年登记的北京及河北两地重型血友病A患儿,排除伴有FⅧ抑制物的患儿。结果:共调查患儿69例,均为男性,两地血友病患儿医保状况存在差异(P<0.05),北京地区医保比例<50%占58.06%,河北地区占100%,北京优于河北;在治疗方案的选择上存在差异(P<0.05),北京地区预防治疗比例为41.94%,河北地区为15.79%,北京患儿更倾向于预防治疗;两地患儿在就学上存在差异(P<0.05),北京地区就学比例为93.55%,河北地区为63.16%,北京患儿就学比例高于河北;不同治疗方案在凝血因子使用量上存在差异(P<0.05),预防治疗组每个月凝血因子用量为(6 615.79±8 629.55)IU,按需治疗组为(1 240.82±1 101.74)IU,预防治疗组高于按需治疗组,但两组患者在有无靶关节、行动障碍、就学等因素上无差异;在靶关节个数的多因素分析中发现,年龄、年出血次数与靶关节个数呈正相关(β=0.063,P=0.040;β=0.016,P=0.025)。结论:不同地区血友病患儿治疗方案的选择受经济、医保、治疗理念等因素影响;预防治疗和按需治疗均未达到很好控制出血减少靶关节形成的治疗目标,与发达国家的血友病防治水平存在差距,呼吁加大血友病的医保支持力度,充分发挥血友病治疗中心的宣传、教育和管理作用。
Objective: To investigate the treatment status and survival status of children with severe hemophilia in different areas. Methods: The cases of severe hemophilia A in Beijing and Hebei registered in our hospital for nearly 10 years were investigated by telephone interview, and children with FⅧ inhibitors were excluded. Results: A total of 69 children were enrolled in this study. All of them were male. The health insurance status of children with hemophilia was different in both regions (P <0.05). The proportion of health insurance in Beijing was <50.06%, that of Hebei was 100%, Beijing was better than Hebei. There were differences in treatment options (P <0.05). The proportion of prophylaxis and treatment in Beijing was 41.94% and that in Hebei was 15.79%. Children in Beijing tended to be more prophylactic and therapeutic. There was a difference in schooling between the two groups P <0.05). The enrollment ratio in Beijing was 93.55% and that in Hebei was 63.16%. The enrollment rate of children in Beijing was higher than that of Hebei. There were differences in the amount of clotting factors among different treatment regimens (P <0.05) The monthly dosage of clotting factor was (6 615.79 ± 8 629.55) IU, and the on-demand treatment group was (1 240.82 ± 1 101.74) IU. The preventive treatment group was higher than the on-demand treatment group, but the patients in both groups had no target joint and dyskinesia There was no difference in the factors such as school attendance. In the multivariate analysis of the number of target joints, it was found that there was a positive correlation between age and number of bleeding and the number of target joints (β = 0.063, P = 0.040; β = 0.016, P = 0.025). Conclusion: The treatment options for children with hemophilia in different regions are affected by such factors as economy, medical insurance and treatment concept. Both prophylaxis and on-demand treatment fail to achieve the goal of controlling bleeding to reduce the formation of target joints well, There is a gap between the levels of disease prevention and treatment, calling for greater support for hemophilia health care and giving full play to the publicity, education and management functions of hemophilia treatment centers.