Dhakal Dilip, Chen Congzhou, Zhang Bo, Li Guanqiao
Vanke School of Public Health, Tsinghua University, Beijing 100084, China.
Guangzhou Magpie Pharmaceuticals Co., Ltd., Guangzhou 510700, China.
Brain Sci. 2025 Jun 28;15(7):696. doi: 10.3390/brainsci15070696.
This study explored the health-related quality of life (HRQoL), psychological health, and patient-reported outcomes (PROs) of patients with amyotrophic lateral sclerosis (ALS) in China, providing insights for enhancing clinical care. A cross-sectional study was conducted among Chinese ALS patients between February and May 2024. Demographics, clinical characteristics, and PROs were assessed. HRQoL and psychological health were evaluated via the 5-item amyotrophic lateral sclerosis assessment questionnaire (ALSAQ-5) and the 4-item patient health questionnaire (PHQ-4), respectively. Spearman's rank correlation, multiple linear regression, and the Kruskal-Wallis H test were used to analyze associations between clinical factors, HRQoL, and psychological health. A total of 237 participants aged 46-65 years (63.3%) were included. The mean ALSAQ-5 score was 64.86±19.34, indicating an impaired HRQoL, whereas the mean PHQ-4 score (5.82 ± 4.10,) suggested varied degree of anxiety and depression. Age, disease duration, ALS severity, fatigue, stress, and pain severity, and respiratory support were significantly associated with HRQoL ( < 0.05). Age, stress severity, and pain severity were significant predictors of psychological distress ( < 0.01). Patients reported diagnostic delay, profound lifestyle changes (96.4%), fear of paralysis (84.8%), and death (49.8%). Most patients (80.6%) expressed a strong desire to stop ALS progression, prioritizing treatments that improve breathing, muscle weakness, swallowing, and mobility issues. ALS profoundly impacts patients' HRQoL and psychological health. Integrating PROs into clinical care strategies is crucial for improving patient outcomes and guiding treatment priorities.
本研究探讨了中国肌萎缩侧索硬化症（ALS）患者的健康相关生活质量（HRQoL）、心理健康状况以及患者报告结局（PROs），为改善临床护理提供了见解。2024年2月至5月对中国ALS患者进行了一项横断面研究。评估了人口统计学、临床特征和PROs。分别通过5项肌萎缩侧索硬化症评估问卷（ALSAQ - 5）和4项患者健康问卷（PHQ - 4）评估HRQoL和心理健康。采用Spearman等级相关性分析、多元线性回归分析和Kruskal - Wallis H检验分析临床因素、HRQoL和心理健康之间的关联。共纳入237名年龄在46 - 65岁之间的参与者（63.3%）。ALSAQ - 5的平均得分为64.86±19.34，表明HRQoL受损，而PHQ - 4的平均得分（5.82±4.10）表明存在不同程度的焦虑和抑郁。年龄、病程、ALS严重程度、疲劳、压力、疼痛严重程度和呼吸支持与HRQoL显著相关（<0.05）。年龄、压力严重程度和疼痛严重程度是心理困扰的显著预测因素（<0.01）。患者报告存在诊断延迟、生活方式发生深刻变化（96.4%）、对瘫痪的恐惧（84.8%）和对死亡的恐惧（49.8%）。大多数患者（80.6%）强烈希望阻止ALS进展，优先选择改善呼吸、肌肉无力、吞咽和行动问题的治疗方法。ALS对患者的HRQoL和心理健康有深远影响。将PROs纳入临床护理策略对于改善患者结局和指导治疗重点至关重要。
