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目的:调查了解苯丙酮尿症(PKU)患儿家长对于疾病相关信息来源和使用情况。方法:采用自行设计问卷调查108例PKU患儿家长对疾病相关信息获取来源和使用情况。结果:94.44%家长对于PKU相关知识渴望知道和了解,5.56%家长对PKU相关知识不想知道或者持无所谓态度。绝大多数家长PKU相关知识是通过医务人员和新筛中心的宣传材料获得,通过报纸杂志及广播电视获得的仅占21.30%,通过网络获取知识的家长占51.85%。家长对获取的相关知识信任度显示,医务人员和新筛中心的官方宣传材料获得了家长100.00%的绝对信任,家长对网络获取知识的信任度为58.33%。结论:PKU患儿家长迫切需要疾病的相关知识,医务人员和新筛中心的官方宣传材料获得了家长的绝对信任。健康教育方式和内容的选择是PKU治疗及预防中需要解决的问题之一。为有效地开展PKU的治疗和预防,应注意提高医务人员健康教育意识及职责。
OBJECTIVE: To investigate the sources and use of information about disease-related diseases in parents of children with phenylketonuria (PKU). Methods: The self-designed questionnaire was used to investigate the source and usage of disease-related information in 108 PKU children. Results: 94.44% of parents were keen to know and understand about PKU related knowledge, 5.56% of parents did not want to know or hold indifferent attitude toward PKU related knowledge. PKU-related knowledge of the vast majority of parents was obtained through publicity materials of medical staffs and new screening centers, accounting for only 21.30% of them received through newspapers, magazines and radio and television, and 51.85% of them gained knowledge through the Internet. Parental trust in the acquired knowledge shows that the official propaganda materials for the medical staff and the New Sieve Center obtained 100.00% absolute trust from parents and 58.33% from parents. CONCLUSIONS: Parents of children with PKU urgently need knowledge about the disease, and the official propaganda materials for medical workers and new screening centers have gained the absolute trust of parents. The choice of health education methods and contents is one of the problems to be solved in the treatment and prevention of PKU. In order to effectively carry out the treatment and prevention of PKU, care should be taken to improve the health education awareness and responsibilities of medical personnel.