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沟通至关重要——高科技通信设备在肌萎缩侧索硬化症严重身体残疾患者姑息治疗中的陷阱与前景

Communication Matters-Pitfalls and Promise of Hightech Communication Devices in Palliative Care of Severely Physically Disabled Patients With Amyotrophic Lateral Sclerosis.

作者信息

Linse Katharina, Aust Elisa, Joos Markus, Hermann Andreas

机构信息

Department of Neurology, Technische Universität Dresden, Dresden, Germany.

German Center for Neurodegenerative Diseases (DZNE) Dresden, Dresden, Germany.

出版信息

Front Neurol. 2018 Jul 27;9:603. doi: 10.3389/fneur.2018.00603. eCollection 2018.

Abstract

Amyotrophic lateral sclerosis (ALS) is the most common motor neuron disease, leading to progressive paralysis, dysarthria, dysphagia, and respiratory disabilities. Therapy is mostly focused on palliative interventions. During the course of the disease, verbal as well as nonverbal communicative abilities become more and more impaired. In this light, communication has been argued to be "the essence of human life" and crucial for patients' quality of life. High-tech augmentative and alternative communication (HT-AAC) technologies such as eyetracking based computer devices and brain-computer-interfaces provide the possibility to maintain caregiver-independent communication and environmental control even in the advanced disease state of ALS. Thus, they enable patients to preserve social participation and to independently communicate end-of-life-decisions. In accordance with these functions of HT-AAC, their use is reported to strengthen self-determination, increase patients' quality of life and reduce caregiver burden. Therefore, HT-AAC should be considered as standard of (palliative) care for people with ALS. On the other hand, the supply with individually tailored HT-AAC technologies is limited by external and patient-inherent variables. This review aims to provide an overview of the possibilities and limitations of HT-AAC technologies and discuss their role in the palliative care for patients with ALS.

摘要

肌萎缩侧索硬化症(ALS)是最常见的运动神经元疾病,会导致进行性瘫痪、构音障碍、吞咽困难和呼吸功能障碍。治疗主要集中在姑息性干预措施上。在疾病过程中,语言和非语言交流能力会越来越受损。鉴于此,交流被认为是“人类生活的本质”,对患者的生活质量至关重要。基于眼动追踪的计算机设备和脑机接口等高科技辅助和替代交流(HT-AAC)技术,即使在ALS的晚期疾病状态下,也提供了保持独立于护理人员进行交流和环境控制的可能性。因此,它们使患者能够保持社会参与并独立传达临终决定。根据HT-AAC的这些功能,据报道其使用可增强自我决定权、提高患者的生活质量并减轻护理人员的负担。因此,HT-AAC应被视为ALS患者(姑息)护理的标准。另一方面,个性化定制的HT-AAC技术的供应受到外部和患者自身变量的限制。本综述旨在概述HT-AAC技术的可能性和局限性,并讨论它们在ALS患者姑息治疗中的作用。

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