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[癫痫患者向成人护理的过渡]

[Transition to adult care for patients with epilepsy].

作者信息

Brandl Ulrich

机构信息

Klinik für Neuropädiatrie, Universitätsklinikum Jena, 07747, Jena, Deutschland.

出版信息

Nervenarzt. 2022 Apr;93(4):359-365. doi: 10.1007/s00115-022-01271-9. Epub 2022 Mar 14.

Abstract

The transition of children and adolescents with epilepsy to the adult healthcare system presents many challenges. The disease is frequently accompanied by cognitive and developmental impairments that make it difficult to achieve self-management of the disease. Seizures are often associated with a loss of consciousness; therefore, conversations regarding medical history often take place only between the physician and the parents. The children and adolescents then usually have a very little knowledge about their disease and do not learn to talk about their seizures and other disease-related problems. Childhood epilepsies are partly caused by rare genetic diseases, and neurologists usually have little experience with these diseases. In the past many of these etiologies were underdiagnosed in pediatrics and never reclassified during adulthood. An improvement of this situation requires long-term assistance over numerous years for the young patients to learn more about their own disease and the healthcare structures for adults. They should also be trained in how to talk about their medical problems with the doctor (physician-patient communication). At the medical level, a well-structured transfer of clinical findings, EEGs, imaging findings, etiologies, the current seizure situation, and the history of therapeutic measures is required. This article provides useful recommendations and information about existing programs and materials to support the management of transition.

摘要

癫痫患儿和青少年向成人医疗体系的过渡面临诸多挑战。该疾病常伴有认知和发育障碍,这使得疾病的自我管理变得困难。癫痫发作常与意识丧失有关;因此,关于病史的交流通常仅在医生和家长之间进行。儿童和青少年随后通常对自己的疾病了解甚少,也没有学会谈论自己的癫痫发作及其他与疾病相关的问题。儿童癫痫部分由罕见的遗传疾病引起,而神经科医生通常对这些疾病经验甚少。过去,许多此类病因在儿科被漏诊,在成年期也从未重新分类。要改善这种情况,需要多年的长期帮助,让年轻患者更多地了解自己的疾病以及成人医疗结构。他们还应接受如何与医生谈论自身医疗问题的培训(医患沟通)。在医疗层面,需要对临床检查结果、脑电图、影像学检查结果、病因、当前癫痫发作情况以及治疗措施史进行条理清晰的交接。本文提供了有关现有项目和资料的有用建议及信息,以支持过渡管理。

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