Triemstra A H, Smit C, VAN DER Ploeg H M, Briët E, Rosendaal F R
Research Fellow, Department of Medical Psychology, Vrije Universiteit Amsterdam, the Netherlands.NVHP Coordinator, Netherlands Hernophilia Society (NVHP), Badhoevedorp, the Netherlands.Professor of Medical Psychology, Department of Medical Psychology, Vrije Universiteit Amsterdam, the Netherlands.Professor of Internal Medicine, Hemostasis and Thrombosis Research Centre, University Hospital Leiden, the Netherlands.Epidemiologist, Department of Clinical Epidemiology, and Hemostasis and Thrombosis Research Centre, University Hospital Leiden, Building 1, CO-P45, PO Box 9600, 2300 RC Leiden, the Netherlands.
Haemophilia. 1995 Jul;1(3):165-71. doi: 10.1111/j.1365-2516.1995.tb00061.x.
Four questionnaire surveys were conducted over a period of 20 years to evaluate long-term effects of haemophilia treatment in the Netherlands. The response to the prestructured questionnaires in 1972, 1978, 1985 and 1992 varied between 70% and 84%. Data concerned treatment modalities, bleeding episodes, hospitalization, absenteeism, joint impairment and employment. Results over the period 1972-92 for patients with severe and moderately severe haemophilia showed that the use of prophylaxis had sharply increased (from 21% to 45%), as was the case for home treatment (from 4% to 62%). Consequently, the annual mean number of bleeds diminished from 19 to 13. Absence from school was markedly reduced (from 32 to 5 days), and sick leave in employed patients had also diminished (from 26 to 22 days). Furthermore, the use of inpatient hospital facilities, as well as employment in haemophilia patients, had nearly equalled that of the general Dutch male population. The self-reported degree of joint impairment showed no overall improvement, but in patients aged under 35 years there seemed to be a slight reduction in severe impairment. Patients aged under 15 years finally had no severe impairment at all. Social participation can only be further improved if arthropathy is prevented from an early age. Therefore adequate prophylactic regimens and close monitoring of joint impairment in young adults are needed.
在20年的时间里进行了四项问卷调查，以评估荷兰血友病治疗的长期效果。1972年、1978年、1985年和1992年对预先设定好的问卷的回复率在70%至84%之间。数据涉及治疗方式、出血发作、住院情况、缺勤情况、关节损伤和就业情况。1972 - 1992年期间，重度和中度重度血友病患者的结果显示，预防治疗的使用大幅增加（从21%增至45%），家庭治疗的情况也是如此（从4%增至62%）。因此，每年的平均出血次数从19次降至13次。缺课情况显著减少（从32天降至5天），在职患者的病假也有所减少（从26天降至22天）。此外，血友病患者使用住院设施的情况以及就业情况几乎与荷兰男性总人口相当。自我报告的关节损伤程度总体上没有改善，但在35岁以下的患者中，严重损伤似乎略有减少。15岁以下的患者最终完全没有严重损伤。只有从幼年时期就预防关节病，社会参与度才能进一步提高。因此，需要有适当的预防方案并密切监测年轻成年人的关节损伤情况。
