广州地区29例血友病患儿家庭治疗及护理现状调查

目的了解广州地区血友病患儿家庭治疗与护理现状，提高家庭治疗与护理水平。方法对广州市血友病治疗中心登记在册的29例广州地区血友病患儿及其父母进行问卷调查，主要内容为患儿一般情况、2006年家庭治疗与护理现状及FISH评分（Functional Independence Score in Hemophilia）。结果只有少数血友病患儿开展凝血因子家庭注射，凝血因子使用量明显不足，治疗效果与血友病患儿家庭护理状况不佳、血友病患儿未能获取有效社会支持有关。结论血友病专业医护人员在指导家庭治疗和护理服务方面只发挥了有限的作用，对血友病患者的健康教育和护理与国际水平相比存在很大差距，缺乏有经验的血友病专业护士．缺少必要的医疗资源，未能建立起紧密的医患合作关系。

Investigation on 29 Hemophilia Children's Home Care Status in Guangzhou

Objective To investigate the hemophilia children＇s home care status in Guangzhou and to improve the home care quality. Methods 29 hemophilia children and their parents were investigated by serf designed questionnaire which included characteristic, home care status, FISH score （Functional Independence Score in Hemophilia） and so on. Results Few hemophilia children had home infusion and the dosage of blood coagulation factor was deficient. Outcome and home care were dissatisfactory and hemophilia children were not given needed support from community. Conclusion Professional medical staffs of hemophilia play a limited role in giving family treatment guidance and nursing service, which is far behind the international level. More experienced nurses of hemophilia and medical resource are needed and the close relationship between doctors and patients have not been established yet.