中国血友病治疗情况：山西省11个治疗中心417例血友病患者的治疗情况回顾

Hemophilia care in China: review of care for 417 hemophilia patients from 11 treatment centers in Shanxi Province.

作者信息

Zhao Hua, Yang Linhua, Long Chao, Guo Yulin, Wu Ruihong, Liu Xiue, Qin Xiuyu, Liang Hongzheng, Duan Zhiguang

机构信息

Nursing College of Shanxi Medical University, Taiyuan, Shanxi 030001, China.

出版信息

Expert Rev Hematol. 2015 Aug;8(4):543-50. doi: 10.1586/17474086.2015.1043263. Epub 2015 May 6.

DOI:10.1586/17474086.2015.1043263

PMID:25948487

Abstract

AIMS

We analyzed the clinical features of 417 patients with hemophilia from 11 Hemophilia Treatment Centers in Shanxi Province (SP) in China.

METHODS

We used data collected in the national registry of hemophilia A and hemophilia B in SP from January 2010 to December 2013.

RESULTS

Ratio of hemophilia A:hemophilia B patients was 5:1, of which 48% (200/417) were severe, 31% (129/417) moderate and 21% (88/417) mild. Episodes of joint bleeding occurred in 73% (305/417) of patients. Only 4% (15/417) of patients received tertiary prophylaxis. Three percent of patients (2/72) were hepatitis B virus-Ab positive, and 7% (5/72) of patients were hepatitis C virus-Ab positive. The incidence of inhibitors was 6% (11/182).

CONCLUSION

The ability to manage hemophilia in SP remains suboptimal. However, due to limited data, the evaluation and extrapolation of large hemophilia populations in SP are restricted, therefore, further studies with a large cohort are needed.

摘要

目的

我们分析了来自中国山西省11家血友病治疗中心的417例血友病患者的临床特征。

方法

我们使用了2010年1月至2013年12月山西省甲型和乙型血友病国家登记处收集的数据。

结果

甲型血友病与乙型血友病患者的比例为5:1，其中48%（200/417）为重度，31%（129/417）为中度，21%（88/417）为轻度。73%（305/417）的患者发生关节出血。只有4%（15/417）的患者接受三级预防。3%的患者（2/72）乙肝病毒抗体呈阳性，7%的患者（5/72）丙肝病毒抗体呈阳性。抑制物的发生率为6%（11/182）。