Unit for Intractable Disease Nursing Care, Tokyo Metropolitan Institute of Medical Science, Tokyo, Japan.
Department of Neurology, Tokyo Metropolitan Neurological Hospital, 2-6-1 Musashidai, Fuchu, Tokyo, 183-0042, Japan.
Neurol Sci. 2023 Jun;44(6):2025-2031. doi: 10.1007/s10072-023-06646-7. Epub 2023 Jan 30.
Macroglossia is one of the clinical signs that emerges in patients with amyotrophic lateral sclerosis (ALS) who are undergoing invasive ventilation.
We aimed to investigate the relationship between the progression of macroglossia and the clinical characteristics during the advanced stages of ALS.
Forty-one patients with ALS using invasive ventilation with tracheostomy were prospectively followed over a 3-year period. We evaluated the prevalence of macroglossia, motor disabilities including oral function, communication ability (communication stage I to V) as a marker of disease progression, and nutritional factors. We analyzed the potential factors affecting the progression of macroglossia using a multivariate logistic analysis.
The number of patients with macroglossia was increased during the follow-up (from 24.4 to 53.7%), while the communication stage progressed from 2.6 in average (SD 1.7) to 3.5 (1.4). During the study, body weight increased, while energy intake decreased, suggesting progressive hypometabolism. Eight patients had newly developed macroglossia during the study and showed greater progression of communication impairment than those without macroglossia. Multivariate logistic regression analysis showed that communication impairment was a factor associated with macroglossia.
Macroglossia in advanced ALS with invasive ventilation is associated with disease progression.
巨舌是接受有创通气的肌萎缩侧索硬化(ALS)患者出现的临床征象之一。
我们旨在研究巨舌进展与 ALS 晚期患者临床特征之间的关系。
前瞻性随访 41 例接受有创通气和气管切开术的 ALS 患者,随访 3 年。我们评估了巨舌的患病率、包括口腔功能在内的运动障碍、作为疾病进展标志物的交流能力(I 至 V 级)以及营养因素。我们使用多变量逻辑回归分析来分析影响巨舌进展的潜在因素。
在随访过程中,巨舌患者的数量增加(从 24.4%增加到 53.7%),而平均交流阶段从 2.6 级(标准差 1.7)进展到 3.5 级(1.4)。在此期间,体重增加,而能量摄入减少,表明代谢逐渐下降。8 例患者在研究期间新出现巨舌,与无巨舌患者相比,其交流障碍的进展更大。多变量逻辑回归分析显示,交流障碍是巨舌的一个相关因素。
接受有创通气的晚期 ALS 患者的巨舌与疾病进展有关。