济宁农村地区21三体综合征致家庭负担调查研究

The lnvestigate and research about the 21 trisomy syndrome to the family burden in the rural areas

目的了解21三体综合征致农村家庭负担,为今后降低21三体综合征对家庭的危害性提供依据。方法对2009年1月至今前来检查并确诊的125名21三体综合征患者的家庭陪成员(陪护人)进行调查,并结合GQOLI量表,对21三体综合征患者家庭陪护人生活、精神状况进行调查研究。结果绝大多数21三体综合征患者家庭支付的当年医疗费用均高于当年收入;通过对其陪护人生活质量调查发现:21三体综合征患者家庭陪护人在GQOLI量表的4个维度的评分均低于同地区普通农村人口,差别有统计学意义(P<0.01)。结论 21三体综合征作为一种常见的出生缺陷,在严重影响患者自身生命质量的同时,给农村家庭造成的经济和精神负担均不容忽视。

Objective： To understand the 21 trisomy syndrome to the family burden,inorder to reduced the 21 trisomy syndrome to the harmfulness of the family.Methods： 125 family accompanying people were tested with GQOLI to invetisgate the living and mental condition.Results： most families with patients pay the medical costs are higher than the families＇ yearly income.The 4 scale of GQOLI of family accompanying people were all belower than the average score of the people in the same rural areas,the difference has statistically significant（P0.01）.Conclusion： as one of the Common birth defects,21 trisomy syndrome could cake serious problems not only to the quality of patients＇ own life,but also to the Economic and mental burden in the rural areas.