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辅助和替代沟通改善肌萎缩侧索硬化症早期阶段的生活质量。

Augmentative and alternative communication improves quality of life in the early stages of amyotrophic lateral sclerosis.

作者信息

Maresca G, Pranio F, Naro A, De Luca R, Maggio M G, Scarcella I, De Domenico C, Bramanti Placido, Conti Nibali V, Portaro S, Calabrò Rocco Salvatore

出版信息

Funct Neurol. 2019 Jan-Mar;34(1):35-43.

Abstract

This study aimed to evaluate the efficacy of low-tech augmentative and alternative communication (AAC) aids in improving quality of life (QoL) and mood disorders, as well as the psychosocial impact of assistive devices, in 10 patients affected by amyotrophic lateral sclerosis (ALS) in the early stage of the disease, when speech difficulties appear. The AACtraining (AAC-T) study lasted around six months and comprised two phases of three months each: AAC-intervention (AAC-I) followed by AAC-familiarization (AAC-F). All the patients were assessed at the beginning (T0) and at the end (T1) of AAC-I, as well as at the end of AAC-F (T2). During the AAC-I phase, we applied a three-phase AAC intervention model to evaluate intelligibility of language, participation patterns, communication needs and adaptation to the AAC tools. All the patients showed a gradual and significant improvement, especially in acceptance of the AAC aids, mood and QoL. Moreover, a reduction of caregiver burden was noted. Our study has demonstrated the utility of the AAC aids also in the early stages of the disease in patients with ALS presenting with dysarthria. In our opinion, AAC-T may act as a bridge between the initial and later phases of the disease, when patients need to use high-tech aids, including an eye-tracking communication device. In conclusion, in this study we highlighted how early AAC-T in patients with ALS may be a valuable tool to demonstrate how specific strategies and low-technology aids can improve QoL of these patients and their caregivers, also decreasing stress and depression.

摘要

本研究旨在评估低技术辅助和替代沟通(AAC)辅助器具对改善生活质量(QoL)和情绪障碍的疗效,以及辅助设备对10例肌萎缩侧索硬化症(ALS)早期患者(此时出现言语困难)的心理社会影响。AAC培训(AAC-T)研究持续约六个月,包括两个为期三个月的阶段:AAC干预(AAC-I),随后是AAC熟悉(AAC-F)。所有患者在AAC-I开始时(T0)和结束时(T1)以及AAC-F结束时(T2)均接受评估。在AAC-I阶段,我们应用了一个三阶段的AAC干预模型来评估语言清晰度、参与模式、沟通需求以及对AAC工具的适应性。所有患者均显示出逐渐且显著的改善,尤其是在对AAC辅助器具的接受度、情绪和生活质量方面。此外,还注意到照顾者负担有所减轻。我们的研究表明,AAC辅助器具对于患有构音障碍的ALS患者在疾病早期也具有效用。我们认为,AAC-T可以在疾病的初始阶段和后期阶段之间架起一座桥梁,后期患者需要使用包括眼动追踪通信设备在内的高科技辅助器具。总之,在本研究中我们强调了,ALS患者早期进行AAC-T可能是一个有价值的工具,可证明特定策略和低技术辅助器具如何能够改善这些患者及其照顾者的生活质量,同时还能减轻压力和抑郁。

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