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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 burden of trisomy 21 on rural families and provide the basis for reducing the trisomy 21 trophism in families in the future. Methods A total of 125 trisomy 21 family members (caretakers) who had been examined and confirmed from January 2009 to present were surveyed. Based on the GQOLI scale, the relationship between family members of trisomy 21 and their family members, Mental status of the investigation and study. Results The majority of trisomy 21 patients paid more for the year than the current year’s medical expenses. Through the survey of their caregivers’ quality of life, they found that family trisomy 21 toddlers in the four dimensions of the GQOLI The scores were lower than the average rural population in the same area, the difference was statistically significant (P <0.01). Conclusion Trisomyosis, as a common birth defect, can not neglect the economic and spiritual burden on rural families, while seriously affecting their own quality of life.