A型血友病患儿家庭治疗护理状况回顾性调查分析

目的调查中国A型血友病4～18岁患儿家庭治疗和护理状况。方法 2006年、2010年两次对血友病家庭治疗和护理状况进行调查。结果 A型血友病患儿诊断年龄和治疗年龄晚于首次出血年龄;凝血因子用量不足;血友病性骨关节病患病率高;开展了家庭治疗的血友病患儿从55例上升到119例,血友病患儿及家庭对发病原因、遗传规律、出血严重程度的评估和正确服用止痛药物认知率分别从80.8%、78.5%、37.4%和48.4%上升到94.7%、94.1%、52.7%和85.5%;在开展家庭康复训练、保持治疗记录完整两方面没有明显改善。结论 A型血友病患儿诊断治疗延迟,凝血因子用量不足,骨关节病发病率高,家庭护理水平仍然有待于进一步提高。

Current status of home care for children with hemophilia A

Objective To investigate the current status of home care for children with hemophilia A.Methods Twice investigation was conducted with a self-designed questionnaire about the status of home care in children with hemophilia A in 2006 and 2010.Results The diagnosis confirming and initial treatment were implemented after initial hemorrhage in children with hemophilia A.Moreover,the dosage of coagulation factor was insufficient and the incidence of joint deformity was high.The number of hemophilia A children re...