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目的:调查PKU患儿家长的心理状况及对筛查工作满意度等方面的意向,了解患儿家长对筛查的评价,从家长层面寻找影响筛查有效实施及筛查最终目标实现的影响因素。方法:采用现场询问、问卷调查和个别访谈的方法进行患儿家长意向调查。采用excel2003对意向问卷进行数据录入及归类整理,用SPSS11.5对数据进行统计分析。结果:66.7%的家长自愿给孩子做新生儿筛查;家长对PKU筛查的不满意主要集中在治疗费用上,仅3.7%的家长对治疗收费表示满意,7.4%的家长比较满意,18.5%的家长认为一般,对治疗收费不满意的家长占25.9%,很不满意的占44.4%。经多因素Logistic回归分析,父母的文化程度、家庭月收入对筛查收费满意程度均无显著性影响。结论:在筛查前告知家长筛查工作的重要性和内容是很有必要的,较高的治疗费用是影响PKU患儿家长满意度的最主要因素,也给家长带来了沉重的心理负担。构建更人性化和更有保障的干预支持系统是非常必要和重要的。
PURPOSE: To investigate the parents ’psychological status and their satisfaction with screening work in PKU children and to find out the parents’ evaluation of screening, and to find out the influential factors that affect the effective implementation of screening and the ultimate goal of screening . Methods: Field survey, questionnaires and individual interviews were conducted to investigate the parents’ intention of children. Excel2003 questionnaire for intentional data entry and sorting, SPSS11.5 statistical analysis of the data. Results: 66.7% of parents voluntarily gave their children newborn screening. The dissatisfaction of parents on PKU screening mainly focused on the cost of treatment. Only 3.7% of parents were satisfied with the treatment fees, 7.4% of parents were satisfied, 18.5% Of parents think that they are not satisfied with the treatment fees accounted for 25.9% of parents, not satisfied with 44.4%. By multivariate logistic regression analysis, the educational level of parents and family monthly income had no significant effect on the satisfaction of screening fees. Conclusion: It is necessary to inform the parents about the importance and content of screening before screening. The higher cost of treatment is the most important factor to affect the parents’ satisfaction in PKU patients and brings a heavy psychological burden to parents . Building a more humane and secure intervention support system is necessary and important.