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苯丙酮尿症的自我监测与自我治疗——提高饮食依从性的一种方法

Towards self-monitoring and self-treatment in phenylketonuria--a way to better diet compliance.

作者信息

Wendel U, Langenbeck U

机构信息

Department of Paediatrics, University Hospital Nijmegen, The Netherlands.

出版信息

Eur J Pediatr. 1996 Jul;155 Suppl 1:S105-7. doi: 10.1007/pl00014224.

Abstract

It has been a long established principle in the treatment of diabetes that the patient or his/her family is responsible for day-to-day monitoring of metabolic control. It is believed that this concept should also now be applied in phenylketonuria. At present, self-monitoring of blood phenylalanine still requires assaying the phenylalanine concentration in capillary blood obtained by finger-stick sampling at home, via mailing to a nearby laboratory. Frequently and rapidly obtained data can guide the patient to adjust dietary phenylalanine intake, provided he and his family have been informed in detail about the disease and trained in practical diet competence. Teaching programmes for patients are to be promoted. A home-monitoring device for blood phenylalanine is at the development stage.

摘要

在糖尿病治疗中,患者或其家属负责日常代谢控制监测是一项长期确立的原则。人们认为,这一概念现在也应应用于苯丙酮尿症。目前,血液苯丙氨酸的自我监测仍需在家中通过手指采血获取毛细血管血样,然后邮寄到附近实验室检测苯丙氨酸浓度。如果患者及其家属已详细了解该疾病并接受了实际饮食能力培训,那么频繁且快速获取的数据可指导患者调整饮食中苯丙氨酸的摄入量。应推广针对患者的教学计划。一种用于血液苯丙氨酸的家庭监测设备正处于研发阶段。

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