综合关怀对血友病患者生存状况影响的研究

Effects of comprehensive care on living conditions of hemophiliac patients

目的分析综合关怀干预对我国血友病患者生存状况的影响。方法借鉴世界血友病联盟的血友病管理经验,结合我国国情,对血友病患者实施综合关怀。在综合关怀干预前后(2004年及2016年)两次对北京市常住血友病患者生存状况进行问卷调查,2004年首次调查作为干预前基线数据,将基线数据与截至2016年接受血友病综合关怀2年或以上患者的调查结果进行比较分析。结果干预前调查患者109例,干预后调查患者136例。综合关怀干预中血友病患者开展预防治疗39例(28.7%),家庭治疗70例(51.5%);在治疗及时性上较基线数据显著提高(P<0.01),干预后患者年平均每月出血次数得到显著控制(P<0.01)。关节功能障碍影响行走显著下降(P<0.01)。结论综合关怀干预后,逐步开展血友病的预防治疗和家庭治疗,血友病患者出血控制较好,治疗更及时,患者的行走能力提升。

Objective To analyze the impact of comprehensive care on living conditions of hemophiliac patients in China. Methods Based on the managerial experience of the World Federation of Hemophilia（WFH） and China＇s national condition,we carried out comprehensive care on patients with hemophilia （PWH） in our center. Question- naire surveys on living condition were conducted before and after intervention （in 2004 and 2016,respectively） to Beijing＇s permanent hemophiliacs. The results of questionnaires conducted in 2004 were settled as baseline data, and a comparative analysis was done between the baseline data and the results of surveys conducted in 2016 in the PWH who had received comprehensive care for at least 2 years. Results Totally 109 cases received baseline survey whereas 136 cases received questionnaires after intervention. Thirty-nine（28.7%） and 70（51.5%） patients conducted prophy-laxis or home treatment after receiving comprehensive care,respectively. There was significant difference （P〈0.01）in terms of treatment timeliness. Similar results were found （P〈0.01）in terms of times of bleeding per year, and there was significant improvement （P〈0.01） on joint disorder after comprehensive care. Conclusion After receiving comprehensive care,PWH are more willing to accept and conduct prophylaxis and home treatment. The bleeding can be controlled more effectively,and the treatment can be given more timely. Meanwhile,PWH can receive more improvements in joint and walking function.