北京儿童医院日常活动评价表对中国血友病儿童的活动评价及影响因素分析

Evaluation of Activities of Daily Activities of Beijing Children's Hospital and its Influencing Factors in Children with Hemophilia in China

目的应用(Beijing children hospital,BCH)日常活动评价表了解现阶段我国血友病儿童的普遍生活能力状况,并探讨其影响因素。方法自2014年1月1日至2014年4月1日期间,向13家血友病中心的血友病患儿家庭发放疾病信息调查问卷及北京儿童医院BCH日常活动评价表,对信息填写完整的问卷进行总结分析。结果共有来自13家医院,279名患儿家庭完成调查问卷。年龄在2.0-17.9岁(8.44±4.07岁)。其中血友病A为257名(92.1%),血友病B为22名(7.9%)。轻型24名(8.6%),中间型140名(50.2%),205名(73.5%)存在家族史。133名(47.7%)存在靶关节病变。活动能力程度与患儿年龄(P<0.001)及其是否有靶关节(P<0.001)相关。其答案在6岁以下及大于等于6岁年龄组的分布具有差异(P=0.001);与有无家族史(P=0.305)、疾病程度(P=0.521)及是否接受过预防治疗(P=0.899)无关。结论我国血友病患儿的现状不容乐观,有待于各界不断积极的努力。本文为现阶段血友病儿童现状提供了客观的描绘,在未来可作为我国儿童血友病治疗进展的有力对比资料。

Objective To assess living activity of haemophiliac children in China with BCH （ Beijing Children＇ s Hospital） assessment scale and discuss impact factors. Methods Since 1^st Jan ,2014 we sent ques- tionare including BCH scale to 13 haemophilia treatment center. By to 1 st April 2014, all centers sent all questionare back. We filed the information and analyzed. Results All 13 hospitals including 279 patients par- ticipated in this study, They were 2. 0-17.9 years old. （ 8.44 ±4. 07 ）. Haemophilia A were 257 （ 92. 1% ）, haemophilia B were 22（7.9% ）. Mild were 24（8.6% ）, modreate for 140（50. 2% ）. Two hundred and five （73.5%）had family history. Target joints existed in 133 （47.7%）patients. Living ability is associated with age （ P 〈0. 001 ） and existence of target joints （P 〈 0. 001 ） , but not related neither to family history nor to se- verity of disease. Conclusion Chines haemophiliac children are still suffering poor reality. This study offered useful data for comparison in future study.