Department of Psychiatry and Social Psychology, University of Murcia, Murcia, Spain.
Blood Coagul Fibrinolysis. 2020 Dec 1;31(1S):S12-S14. doi: 10.1097/MBC.0000000000000988.
The carrier testing, genetic counseling and prenatal diagnosis have become an integrated part of the comprehensive care for hemophilia, but quality of life and management of carriers frequently remain suboptimal. It is paramount to evaluate the physical and psycho-social impact of them as problematic physical, psychological and social situations are not uncommon. There are to instruct them about their hemorrhagic possible symptoms and condition for offering solutions that meet their needs and help them enjoy a satisfactory quality of life in all life stages.
携带者检测、遗传咨询和产前诊断已成为血友病综合护理的一个组成部分,但携带者的生活质量和管理常常仍不尽人意。评估他们的身体和心理社会影响至关重要,因为常见的身体、心理和社会问题并不少见。需要指导他们了解自己可能出现的出血症状和病情,提供满足他们需求的解决方案,帮助他们在所有生命阶段都能享受满意的生活质量。