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目的探讨苯丙氨酸羟化酶(PAH)缺乏症患儿低苯丙氨酸饮食治疗依从性的影响因素。方法通过查阅病历档案、上门访视或电话随访及现场调查等方式对陕西省10所新生儿筛查中心2007年6月至2013年12月确诊的PAH缺乏症患儿饮食治疗状况进行调查,分为依从性好组148例、依从性差组191例,采用单因素、多因素Logistic逐步回归对数据分析患儿治疗依从性的影响因素。结果低苯丙氨酸饮食治疗依从性好组与依从性差组的单因素分析显示:性别、确诊天数,确诊血苯丙氨酸值、母亲职业、家庭居住环境组间差异无统计学意义(P>0.05);父亲文化程度、母亲文化程度、父亲职业、家庭月收入、父母对疾病的认识,组间差异有统计学意义(χ2=12.386、34.483、10.623、31.429,t=5.203,P<0.05)。治疗依从性好组与依从性差组的多因素Logisdc逐步回归分析显示:母亲学历、家庭年收入、父母对疾病的认识为治疗依从性的影响因素(P均<0.05)。结论母亲学历、家庭年收入、父母对疾病的认识程度是影响PAH缺乏症患儿饮食治疗依从性的决定性因素。
Objective To investigate the influencing factors of compliance of low phenylalanine diet in children with phenylalanine hydroxylase (PAH) deficiency. Methods By investigating the medical record, home visit or telephone follow-up and field investigation, we investigated the dietary treatment of children with PAH deficiency from 10 neonatal screening centers in Shaanxi Province from June 2007 to December 2013, 148 patients with good compliance, 191 patients with poor compliance, using single factor, multivariate Logistic stepwise regression analysis of data on the impact of treatment compliance. Results The univariate analysis of poor phenylalanine diet compliance and poor adherence showed that there was no significant difference between gender, duration of diagnosis, serum phenylalanine value, mothers’ occupation and family living environment (P > 0.05). There was a significant difference between groups in education level of father, mother’s education level, father’s occupation, family monthly income and parents’s understanding of disease (χ2 = 12.386,34.483,10.623,31.429, t = 5.203, P <0.05 ). Logistic regression analysis of multivariate Logisdc showed that maternal education, family income, and parents’ understanding of the disease were the factors influencing treatment compliance (all P <0.05). Conclusion Maternal education, annual family income, and parents’ awareness of the disease are the key determinants of diet compliance in children with PAH deficiency.