Kadir R A, Sabin C A, Pollard D, Lee C A, Economides D L
University Department of Obstetrics and Gynaecology, Royal Free Hospital, Hampstead, London, UK.
Haemophilia. 1998 Nov;4(6):836-41. doi: 10.1046/j.1365-2516.1998.00208.x.
Menorrhagia is a common and major problem for patients with inherited bleeding disorders, especially vWD. Quality of life during menstruation was assessed in 99 patients with inherited bleeding disorders including vWD (n = 57), carriers of haemophilia A (n = 17), carriers of haemophilia B (n = 7) and FXI deficiency (n = 18), and comparison was performed with an age-matched control group (n = 69). A questionnaire was used that included four main sections: (i) general health, (ii) health and daily activities, (iii) dysmenorrhea and (iv) quality of life during the menstrual period. Although patients with inherited bleeding disorders felt that their health (in general) was very good, they had significantly poorer quality of life on all the scales used than controls. Thirty-nine per cent reported having cut down on the amount of time spent on work and other activities as a result of their menstruation; 47% felt that they accomplished less than they would like during this period, 38% felt that they were limited in the kind of work and other activities that they could do, and 40% found that it took extra effort to perform their work. Fifty-one per cent experienced moderate, severe or very severe dysmenorrhoea. Quality of life was statistically poorer in patients with vWD, menstrual scores > 100 according to the pictorial blood assessment chart (PBAC), those who had periods > or = 8 days and those who experienced flooding or passage of clots. In conclusion, menstruation has a negative effect on the quality of life in patients with inherited bleeding disorders especially in those with objectively confirmed menorrhagia.
月经过多是遗传性出血性疾病患者常见的主要问题，尤其是血管性血友病（vWD）。对99例遗传性出血性疾病患者的经期生活质量进行了评估，其中包括vWD患者（n = 57）、甲型血友病携带者（n = 17）、乙型血友病携带者（n = 7）和因子XI缺乏症患者（n = 18），并与年龄匹配的对照组（n = 69）进行了比较。使用了一份问卷，包括四个主要部分：（i）总体健康状况，（ii）健康与日常活动，（iii）痛经，（iv）经期生活质量。尽管遗传性出血性疾病患者认为他们的（总体）健康状况非常好，但在所有使用的量表上，他们的生活质量明显低于对照组。39%的患者报告称，由于月经，他们减少了工作和其他活动的时间；47%的患者觉得在此期间他们完成的事情比预期少，38%的患者觉得他们能做的工作和其他活动种类受到限制，40%的患者发现完成工作需要付出额外努力。51%的患者经历了中度、重度或非常重度的痛经。根据图片式失血评估图（PBAC），月经评分>100的vWD患者、经期>或=8天的患者以及经历大量出血或有血块排出的患者，其生活质量在统计学上较差。总之，月经对遗传性出血性疾病患者的生活质量有负面影响，尤其是在那些经客观证实为月经过多的患者中。
