Both Hemophilia Health Care Providers and Hemophilia A Carriers Report That Carriers Have Excessive Bleeding
Both Hemophilia Health Care Providers and Hemophilia A Carriers Report That Carriers Have Excessive Bleeding
复制标题
DOI：
10.1097/mph.0000000000000022
复制
发表时间：
2014-05-01
影响因子：
1.2
通讯作者：
Sidonio, Robert F., Jr.
中科院分区：
文献类型：
--
作者：
Paroskie, Allison;Oso, Olatunde;Sidonio, Robert F., Jr.
简介：血友病A是因子VIII活性降低的结果，是一种X连锁隐性出血性疾病。既往报告血友病A携带者提示出血倾向增加。我们的目的是确定血友病A携带者出血表型的态度和理解，以及从医疗服务提供者和受影响患者的角度对携带者检测时机的意见。从这次调查的数据被用来作为一个正在进行的前瞻性study.Materials和方法的初步数据：一个电子调查分发给医生和护士在血友病治疗中心，血友病A携带者是美国血友病联合会的成员。结果：51%（36/51）的血友病A携带者和78%（36/46）的血友病A携带者认为凝血因子VIII活性正常的血友病A携带者有出血倾向（P
Introduction:Hemophilia A, the result of reduced factor VIII activity, is an X-linked recessive bleeding disorder. Previous reports of hemophilia A carriers suggest an increased bleeding tendency. Our objective was to determine the attitudes and understanding of the hemophilia A carrier bleeding phenotype, and opinions regarding timing of carrier testing from the perspective of both medical providers and affected patients. Data from this survey were used as preliminary data for an ongoing prospective study.Materials and Methods:An electronic survey was distributed to physicians and nurses employed at Hemophilia Treatment Centers, and hemophilia A carriers who were members of Hemophilia Federation of America. The questions focused on the clinical understanding of bleeding symptoms and management of hemophilia A carriers, and the timing and intensity of carrier testing.Results:Our survey indicates that 51% (36/51) of providers compared with 78% (36/46) of carriers believe that hemophilia A carriers with normal factor VIII activity have an increased bleeding tendency (P