Department of Neurology, University Clinical Center of Medical University of Warsaw, Warsaw, Poland.
Department of Neurology, University of Ulm, Ulm, Germany.
BMC Palliat Care. 2023 Jun 13;22(1):72. doi: 10.1186/s12904-023-01189-2.
Given the inevitable relentless progressing nature of amyotrophic lateral sclerosis (ALS), it is essential to identify factors influencing patients' wellbeing. The study aimed to prospectively assess factors influencing the quality of life (QoL) and depression in ALS patients compared to healthy controls (HCs) from Poland, Germany and Sweden and their relationship to socio-demographic and clinical factors.
314 ALS patients (120 from Poland, 140 from Germany, 54 from Sweden) and 311 age-, sex- and education-level-matched HCs underwent standardized interviews for quality of life, depression, functional status and pain.
Patients from all three countries showed similar levels of functional impairment (ALSFRS-R). Overall, ALS patients assessed their quality of life as lower compared to HCs (p < 0.001 for the anamnestic comparative self-assessment (ACSA), p = 0.002 for the Schedule for the evaluation of the subjective quality of life - SEIQoL- direct weighting (SEIQoL-DW). Also, the German and Swedish patients, but not the Polish, reported higher depression levels than the corresponding HCs (p < 0.001). Analysis of ALS groups revealed that functional impairment was related to a lower quality of life (ACSA) and higher depression levels among German ALS patients. Longer time since diagnosis predicted lower depression and (in male subjects) higher quality of life.
ALS patients assess their quality of life and mood lower than healthy individuals within the studied countries. The relationships between clinical and demographic factors are moderated by country of provenance, which bears implications for the design and interpretation of scientific and clinical studies, which should reflect the complexity and heterogeneity of mechanisms determining QoL.
鉴于肌萎缩侧索硬化症（ALS）不可避免的持续进展性质，确定影响患者健康的因素至关重要。本研究旨在前瞻性评估与来自波兰、德国和瑞典的健康对照者（HCs）相比，影响 ALS 患者生活质量（QoL）和抑郁的因素，并分析其与社会人口学和临床因素的关系。
314 名 ALS 患者（波兰 120 名，德国 140 名，瑞典 54 名）和 311 名年龄、性别和教育程度匹配的 HCs 接受了生活质量、抑郁、功能状态和疼痛的标准化访谈。
来自所有三个国家的患者均表现出相似的功能障碍水平（ALSFRS-R）。总体而言，ALS 患者自评生活质量低于 HCs（回溯性比较自我评估（ACSA），p < 0.001；直接加权的生活质量主观评估量表-SEIQoL-DW（SEIQoL-DW），p = 0.002）。此外，德国和瑞典的患者比相应的 HCs 报告了更高的抑郁水平（p < 0.001）。对 ALS 组的分析表明，功能障碍与德国 ALS 患者较低的生活质量（ACSA）和较高的抑郁水平相关。诊断后时间的长短与较低的抑郁水平（在男性受试者中）和较高的生活质量相关。
在所研究的国家中，ALS 患者自评生活质量和情绪均低于健康个体。临床和人口统计学因素之间的关系受到原籍国的调节，这对科学和临床研究的设计和解释具有重要意义，应反映决定生活质量的机制的复杂性和异质性。
