A Perspective on the Quality of Life of Hemophilia A Patients in Romania—A Study on 100 Patients

C. Guran, H. Ioniță, M. Haţegan, I. Ioniţă, A. Trăilă, Alina-Maria Ilie
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Abstract

Hemophilia A is an X-linked coagulopathy, where there is a deficit in the production of the coagulation factor VIII. Even though there is a higher incidence of hemophilia A than of hemophilia B, it is still considered a rare disease, as its incidence is of 1 in 10,000 people born. We have applied three questionnaires regarding quality of life: Haem-A-QoL, Haemo-SYM and EQ-5D-5L to 101 adult patients with hemophilia A, which were separated into two groups: on-demand and prophylactic treatment. The results showed a relatively young lot, with medium and high education, but with a sedentary lifestyle and are pensioners. They also seem to have moderate mobility issues but, overall, a good quality of life. The quality of life in our studied lot is relatively good, but a more diverse lot is advised.
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罗马尼亚A型血友病患者生活质量调查——100例患者的研究
血友病A是一种x连锁凝血病,其中凝血因子VIII的产生存在缺陷。尽管a型血友病的发病率高于B型血友病,但它仍然被认为是一种罕见的疾病,因为它的发病率是1 / 10000。我们对101例成年A型血友病患者进行了3份生活质量问卷:haema - qol、Haemo-SYM和EQ-5D-5L,分为按需治疗组和预防性治疗组。结果显示,这些人相对年轻,受过中等和高等教育,但生活方式久坐不动,而且是退休人员。他们似乎也有适度的行动问题,但总体而言,生活质量很好。我们研究的人群的生活质量相对较好,但我们建议他们的生活更加多样化。
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