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肌萎缩侧索硬化症患者的生活质量、残疾和临床变量。

Quality of life, disability, and clinical variables in amyotrophic lateral sclerosis.

机构信息

Universidade Federal de Minas Gerais, Departamento de Fisioterapia, Belo Horizonte MG, Brazil.

Universidade Federal de Minas Gerais, Programa de Pós-Graduação em Neurociência, Belo Horizonte MG, Brazil.

出版信息

Arq Neuropsiquiatr. 2022 Mar;80(3):255-261. doi: 10.1590/0004-282X-ANP-2021-0201.

Abstract

BACKGROUND

Amyotrophic lateral sclerosis (ALS) is a motor neuron disease that results in a progressive increase in dysfunctions, limitations and restrictions over time, which can impact on quality of life (QoL). Therefore, expanding knowledge on QoL and possible factors associated with ALS can enable the development of actions to ensure greater wellbeing for the population.

OBJECTIVE

To investigate QoL in ALS and determine associations with demographic, functional and clinical aspects.

METHODS

Forty-five individuals with ALS (56.4±11.1 years) participated in the study. Demographic, clinical and functional aspects were investigated. Functioning and QoL were assessed using disease-specific tools (ALS Functional Ranting Scale-Revised/ALSFRS-R and ALS Assessment Questionnaire/ALSAQ-40). Fatigue was assessed using the Fatigue Severity Scale. Descriptive, correlation and stepwise multiple linear regression analyses were performed with the aid of the SPSS.

RESULTS

The mean ALSAQ-40 score was 279.0±118.3. QoL was significantly worse among women (p=0.001) and poor QoL was associated with the inability to walk (p=0.014), pain (p=0.021) and disease severity (p≤0.002). QoL was strongly correlated with the ALSFRS-R score (r=-0.82). Moderate to weak correlations were found for mobility [turning in bed (r=-0.62), locomotion (r=-0.33) and sit to stand (r=-0.40)], strength (r=-0.49), fatigue (r=0.35) and pain (r=-0.32) (p<0.03). The regression analysis revealed that the ALSFRS-R score (β=-0.76; p=0.00) and fatigue (β=0.20; p=0.04) were predictors of QoL.

CONCLUSIONS

QoL was worse in women, older people, severe stages of ALS, patients with impaired mobility, those with a poorer physical performance and those who reported pain. Functional status and fatigue are predictors of QoL in ALS.

摘要

背景

肌萎缩侧索硬化症(ALS)是一种运动神经元疾病,随着时间的推移,其功能障碍、受限和限制逐渐增加,这可能会影响生活质量(QoL)。因此,增加对 QoL 和可能与 ALS 相关的因素的了解,可以为制定确保人群更健康的行动提供依据。

目的

调查 ALS 患者的 QoL,并确定其与人口统计学、功能和临床方面的相关性。

方法

45 名 ALS 患者(56.4±11.1 岁)参与了研究。调查了人口统计学、临床和功能方面。使用特定疾病的工具(肌萎缩侧索硬化功能评定量表修订版/ALSFRS-R 和肌萎缩侧索硬化评估问卷/ALSAQ-40)评估功能和 QoL。使用疲劳严重程度量表评估疲劳。使用 SPSS 进行描述性、相关性和逐步多元线性回归分析。

结果

平均 ALSAQ-40 评分为 279.0±118.3。女性的 QoL 明显更差(p=0.001),且 QoL 较差与无法行走(p=0.014)、疼痛(p=0.021)和疾病严重程度(p≤0.002)有关。QoL 与 ALSFRS-R 评分呈强相关(r=-0.82)。移动性[床上翻身(r=-0.62)、移动(r=-0.33)和坐立站起(r=-0.40)]、力量(r=-0.49)、疲劳(r=0.35)和疼痛(r=-0.32)(p<0.03)呈中度至弱相关。回归分析显示,ALSFRS-R 评分(β=-0.76;p=0.00)和疲劳(β=0.20;p=0.04)是 QoL 的预测因素。

结论

女性、老年人、ALS 晚期、活动受限、身体机能较差和有疼痛的患者 QoL 更差。功能状态和疲劳是 ALS 患者 QoL 的预测因素。

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