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肌萎缩侧索硬化症中的味觉变化及其对生活质量的影响。

Taste changes in amyotrophic lateral sclerosis and effects on quality of life.

机构信息

Neuromuscular Omnicentre (NEMO)-Fondazione Serena Onlus, Piazza Ospedale Maggiore, 3, 20162, Milan, Italy.

Neurorehabilitation Unit, Department of Biomedical Sciences for Health, University of Milan, Milan, Italy.

出版信息

Neurol Sci. 2019 Feb;40(2):399-404. doi: 10.1007/s10072-018-3672-z. Epub 2018 Dec 4.

Abstract

The primary aim of the study is to evaluate possible taste changes in a cohort of amyotrophic lateral sclerosis patients (pALS) with dysphagia, focusing on eventual psychological and quality of life (QoL) implications. The second aim is to evaluate the changes of QoL following the use of a specific device that provides food flavour. Thirty-two ALS patients were recruited and divided into two groups: subjects feeding only through enteral tube (ET) and subjects still eating by oral way (OW). A specific set of questionnaires was selected and adapted to investigate possible changes of taste and the impact on psychological status and QoL. Moreover, a specific device that provides food flavours in a safety manner was applied to all patients. We found a perceived reduction of taste in ALS patients, in particular in the ET group. All patients showed a strong interest in the preservation of taste, and its loss negatively related to their QoL. The use of the flavour device improved the perceived QoL showing no side effects, even in the ET group. For the first time, our study revealed changes in taste perception in a cohort of ALS patients and the negative consequences that these changes have on psychological status and QoL. Furthermore, the positive effects of the device used to provide flavours suggest a possible rehabilitative effect, which should be better evaluated and confirmed in further studies.

摘要

本研究的主要目的是评估吞咽困难的肌萎缩侧索硬化症(ALS)患者群体中味觉变化的可能性,重点关注潜在的心理和生活质量(QoL)影响。第二个目的是评估使用特定的提供食物味道的设备后 QoL 的变化。招募了 32 名 ALS 患者,并将其分为两组:仅通过肠内管(ET)喂养的患者和仍通过口服途径(OW)进食的患者。选择了一套特定的问卷来调查味觉的变化及其对心理状态和 QoL 的影响。此外,还向所有患者应用了一种安全提供食物味道的特定设备。我们发现 ALS 患者的味觉感知下降,特别是在 ET 组。所有患者都对保持味觉表现出强烈的兴趣,味觉的丧失与他们的 QoL 呈负相关。味道设备的使用改善了感知到的 QoL,没有副作用,即使在 ET 组也是如此。本研究首次揭示了 ALS 患者群体中味觉感知的变化,以及这些变化对心理状态和 QoL 的负面影响。此外,该设备提供味道的积极效果表明可能具有康复作用,应在进一步研究中进行更好的评估和确认。

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