福建省青少年血友病患儿健康相关生存质量的现况分析  

Analysis of the current status of health-related living quality in adolescent children patients with hemophilia in Fujian Province

作　　者：王玉芳[1] 陈春蓉[1] 艾凤青 林燕芳[1] WANG Yu-fang;CHEN Chun-rong;AI Feng-qing;LIN Yan-fang

机构地区：[1]福建省血液病研究所,福建省血液病学重点实验室,福建医科大学附属协和医院,福州市350001 [2]福建医科大学护理学院

出　　处：《护理实践与研究》2020年第19期46-48,共3页Nursing Practice and Research

基　　金：福建省血液医学中心建设项目闽政办(2017)4号;国家和福建省临床重点专科建设项目。

摘　　要：目的了解福建省青少年血友病患者生存质量现况。方法选取2018年1—7月福建省福州市血液中心和厦门市“血友病之家”登记在册的5~18岁血友病患儿63例,采用“青少年血友病患者一般情况调查问卷”和“加拿大血友病儿童生活质量评估工具”(CHO-KLAT)中文版进行调查。结果福建省血友病患儿CHO-KLAT问卷总分49.41分,低于国外血友病患儿问卷总分分值,44.44%的血友病患儿治疗费用占家庭年总收入10%~50%,73.02%的血友病患儿或家属觉得治疗最困难的地方在于经济问题,仅53.97%的血友病患儿在首次出血时即立即就诊。87.30%的血友病患儿延误过治疗。结论福建省血友病患儿健康相关生存质量低,家庭经济负担大,治疗情况差。福建省政府及相关部门应着手开展血友病综合关怀工作模式,建立紧密的医患合作关系,为血友病患儿提供更多的医疗资源,制定相关措施或政策关注血友病群体,给予他们更多社会支持与经济帮助,提高福建省血友病患儿健康水平和生存质量。Objective To understand the current status of living quality in adolescent children patients with hemophilia in Fujian province.Methods To select 63 cases of children patients with hemophilia who were aged 5-18 years and registered in the Fuzhou Blood Center of Fujian Province and the"Haemophilia Home"in Xiamen City from January to July 2018 was set as this study subjects,and the"General survey questionnaire for adolescent patients with hemophilia"and the Chinese version of"Canadian hemophilia outcomes-kids'life assessment tool(CHO-KLAT)"was used to investigate.Results The total score of the CHO-KLAT questionnaire for children patients with hemophilia in Fujian Province was 49.41,which was lower than the total score of the questionnaire for children patients with hemophilia abroad.44.44%of children patients with hemophilia account for 10%-50%of the total family income,73.02%of children patients with hemophilia or their family members believed that the most difficult part of treatment lay in economic problems,and only 53.97%of children patients with hemophilia saw a doctor immediately when they bled for the first time.87.30%of children patients with hemophilia had delayed treatment.Conclusion Children patients with hemophilia in Fujian Province had a low health-related quality of life,a large family financial burden,and poor treatment.The Fujian Provincial Government and relevant departments should initiate a comprehensive nursing work model for hemophilia,establish a close doctor-patient partnership,provide more medical resources for children patients with hemophilia,formulate relevant measures or policies to pay attention to the hemophilia groups,and provide them more social support and economic help in order to improve the health and living quality of children patients with hemophilia in Fujian Province.

关 键 词：福建省 血友病 青少年 生存质量 

分 类 号：R473.55[医药卫生—护理学]