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首页> 美国卫生研究院文献>Frontiers in Neurology >Dysphagia in Amyotrophic Lateral Sclerosis: Impact on Patient Behavior Diet Adaptation and Riluzole Management
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Dysphagia in Amyotrophic Lateral Sclerosis: Impact on Patient Behavior Diet Adaptation and Riluzole Management

机译：肌萎缩性侧索硬化症的吞咽困难：对患者行为饮食适应和利鲁唑管理的影响

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This retrospective study aimed to investigate the clinical features associated with deteriorated swallow in amyotrophic lateral sclerosis (ALS) patients with spinal and bulbar onset, describe the modification of diet and liquid intake, and assess the impact of dysphagia on the use of riluzole. One hundred forty-five patients were observed periodically every 3–6 months. They underwent routinely fiberoptic endoscopic evaluation of swallowing (FEES) and spirometry; dysphagia severity was classified according to the Penetration Aspiration Scale and the Pooling score (P-score) integrated with other parameters such as sensation, collaboration, and age (P-SCA score). During a mean follow-up period of about 2 years, the percentage of ALS patients suffering from dysphagia increased to 85 (rising from 35 to 73% in patients with spinal onset and from 95 to 98% in those with bulbar onset). Also, 8% of patients with dysphagia by FEES did not perceive the disorder. The frequency of normal and semi-solid diets decreased over time, while that of pureed diets and percutaneous endoscopic gastrostomy (PEG) prescription increased. Forty-four percent of dysphagic patients refused thickeners or PEG. A significant difference was observed in the mortality rate between patients untreated with riluzole and patients treated with riluzole oral suspension (p < 0.05). Disease duration mainly impacted on the frequency of dysphagia in spinal onset patients, appearing very early in those with bulbar onset. Riluzole oral suspension would allow the safe administration in dysphagic ALS patients to avoid tablet crushing and consequent dispersion in food, common practices that are inconsistent with the safe and effective use of the drug.
机译：这项回顾性研究旨在调查伴有脊髓和延髓发作的肌萎缩性侧索硬化症（ALS）患者吞咽恶化的临床特征，描述饮食和液体摄入的改变，并评估吞咽困难对利鲁唑的使用。每3-6个月定期观察一百四十五名患者。他们定期进行吞咽（FEES）和肺活量测定的纤维内窥镜评估；吞咽困难的严重程度根据穿透愿望量表和合并得分（P评分）以及其他参数（例如感觉，协作和年龄）进行分类（P-SCA得分）。在平均约2年的随访期内，吞咽困难的ALS患者所占百分比增加到85（脊柱发作患者从35％上升到73％，延髓发作患者从95％上升到98％）。而且，有8％的因FEES引起的吞咽困难的患者没有意识到这种疾病。正常饮食和半固体饮食的频率随着时间的流逝而减少，而浓汤饮食和经皮内镜胃造口术（PEG）处方的频率则增加。吞咽困难的患者中有44％拒绝使用增稠剂或PEG。未使用利鲁唑治疗的患者与使用利鲁唑口服混悬剂治疗的患者之间的死亡率有显着差异（p <0.05）。疾病持续时间主要影响脊柱发作患者吞咽困难的频率，在延髓发作患者中出现得很早。利鲁唑口服混悬液可以使吞咽困难的ALS患者安全服用，避免片剂压碎和随后分散在食物中，这是与安全有效使用药物不一致的常见做法。

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