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目的:探索解决PKU新生儿治疗费用的最佳途径及PKU治疗和管理的模式,评价免费治疗补助的干预效果,为全国范围的推广应用提供科学的依据。方法:200名患儿接受免费特殊奶粉补助,随访患儿的体格和智力发育情况,随访检测患儿血液苯丙氨酸(Phenylalanine,简写为Phe)浓度;开展新筛健康教育,设置PKU患儿募集和特殊奶粉补助流程,规范管理。结果:体格发育正常的补助患儿占检查人数中99.45%,智力发育正常的补助患儿占检查人数中95.97%;患儿血Phe浓度控制在4mg/dl以内的次数占总检测次数的比例能达到80%的人数仅占37.50%。结论:特殊奶粉免费补助能有效提高治疗依从性,但仍需要提高血Phe浓度控制在4mg/dl以内的次数占总检测次数的比例能达到80%的患儿比例。
OBJECTIVE: To explore the best way to solve the neonatal treatment of PKU and the model of PKU treatment and management, to evaluate the intervention effect of free treatment subsidy and to provide a scientific basis for the popularization and application nationwide. Methods: 200 children received free special milk powder subsidy. The physical and mental development of children were followed up. Phenylalanine (Phe) concentration in blood was measured at follow-up. Healthy education of new screen was set up and children with PKU were set up Raise and special milk powder subsidy process, standardize management. Results: The physical development of children with normal subsidies accounted for 99.45% of the total number of check-ups, mental retardation of children with normal support accounted for 95.97% of the number of check; children with blood Phe concentration control within 4mg / dl the proportion of the total number of tests can The number of people who reach 80% only accounts for 37.50%. CONCLUSIONS: The special subsidies for special milk powder can effectively improve the treatment compliance. However, it is still necessary to increase the proportion of children whose blood Phe concentration is less than 4mg / dl and can reach 80% of the total number of tests.