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

Q2 Medicine Functional neurology Pub Date : 2019-01-01
G Maresca, F Pranio, A Naro, R De Luca, M G Maggio, I Scarcella, C De Domenico, Placido Bramanti, V Conti Nibali, S Portaro, Rocco Salvatore Calabrò
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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.

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在肌萎缩性侧索硬化症的早期阶段,增强和替代交流改善了生活质量。
本研究旨在评估低技术辅助和替代沟通(AAC)辅助在改善生活质量(QoL)和情绪障碍方面的疗效,以及辅助装置对10名肌萎缩侧索硬化症(ALS)患者在疾病早期出现语言困难时的社会心理影响。aac训练(AAC-T)研究持续了大约六个月,包括两个阶段,每个阶段三个月:aac -干预(AAC-I)和aac -熟悉(AAC-F)。所有患者均在AAC-I治疗开始(T0)、结束(T1)及AAC-F治疗结束(T2)时进行评估。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的可理解性、参与模式、沟通需求和对AAC工具的适应。所有患者均表现出渐进和显著的改善,特别是在接受AAC辅助治疗、情绪和生活质量方面。此外,还注意到照顾者负担的减轻。我们的研究已经证明了AAC辅助在以构音障碍为症状的ALS患者的疾病早期阶段的效用。在我们看来,AAC-T可以作为疾病初期和后期阶段之间的桥梁,当患者需要使用高科技辅助设备时,包括眼球追踪通信设备。总之,在这项研究中,我们强调了ALS患者早期AAC-T可能是一个有价值的工具,可以证明特定策略和低技术辅助如何改善这些患者及其护理人员的生活质量,同时减少压力和抑郁。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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来源期刊
Functional neurology
Functional neurology 医学-神经科学
CiteScore
3.90
自引率
0.00%
发文量
0
审稿时长
>12 weeks
期刊介绍: Information not localized
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