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目的探讨新疆地区经典型苯丙酮尿症(phenylketonuria,PKU)患儿的治疗现状,分析影响新疆地区经典型PKU患儿治疗依从性的因素。方法选取2011年1月-2015年1月在新疆医科大学第一附属医院新生儿疾病筛查中心筛查确诊及临床延迟发现的PKU患儿33例为研究对象,依据确诊时间分为新筛患儿组(14例)和延迟发现患儿组(19例),采用查阅病历和电话随访的方式对PKU患儿治疗状况进行调查,采用单因素及多因素Logistic回归法及χ2检验分析影响新疆地区PKU患儿治疗依从性的因素。结果家庭年收入在平均水平以下是PKU患儿治疗依从性低的危险因素(OR=2.815,P<0.05),少数民族(维、回、哈)是PKU患儿治疗依从性低的危险因素(OR为1.332~2.240,P<0.05),新筛患儿的治疗依从性高于延迟发现患儿(P<0.05)。不同性别间PKU患儿治疗依从性比较,差异无统计学意义(P>0.05)。结论家庭年收入(平均水平以下)、民族(少数民族)和确诊时间(延迟发现患儿)是影响新疆地区经典型PKU患儿治疗依从性的重要因素;扩大新生儿疾病筛查覆盖范围,为少数民族患儿配备少数民族医生,是提高患儿治疗依从性的一种方法。
Objective To investigate the treatment status of classic phenylketonuria (PKU) in Xinjiang and to analyze the factors influencing the compliance of classical PKU in Xinjiang. Methods From January 2011 to January 2015, 33 children with PKU confirmed by screening and neonatal screening screening in the First Affiliated Hospital of Xinjiang Medical University were selected as the study subjects, and were divided into new screening patients (14 cases) and delayed detection of children (19 cases). The medical condition of PKU children were investigated by referring to medical record and telephone follow-up. Univariate and multivariate logistic regression analysis and χ2 test were used to analyze the influence of Xinjiang PKU treatment of children with compliance factors. Results The average annual family income was below the average level in children with PKU. The minority of PKU children with low compliance (OR = 2.815, P <0.05), and ethnic minorities (Victoria, Hui and Ha) OR was 1.332 ~ 2.240, P <0.05). The treatment compliance of new screening children was higher than that of children with delayed detection (P <0.05). There was no significant difference in the compliance of PKU between different sexes (P> 0.05). Conclusion Family income (below average level), ethnic minority (ethnic minorities) and time of diagnosis (delayed detection of children) are important factors influencing the treatment compliance of classic PKU children in Xinjiang. Expanding coverage of newborn disease screening is Minority children with ethnic doctors, is to improve the treatment of children with a method of compliance.