Department of Neurology, Ruhr-University Bochum, BG-Kliniken Bergmannsheil GmbH, Bochum, Germany.
Qual Life Res. 2011 May;20(4):569-74. doi: 10.1007/s11136-010-9781-7. Epub 2010 Nov 18.
Amyotrophic lateral sclerosis (ALS) is a lethal neurodegenerative disease affecting the motor nervous system and currently lacking effective means of treatment. The focus of ALS treatment therefore lies in palliative treatment from a multidisciplinary team. Published findings regarding affective components and patients' perceived quality-of-life (QoL) as well as comparative reports of family members/caregivers remain equivocal.
In this study, 41 ALS patients and their relatives were enrolled in a study employing the 12-item ALS-Depression-Inventory (ADI-12) and the Munich quality-of-life dimensions list (MLDL). The ALS-functional rating scale (ALSFRS-R) was used to evaluate physical disabilities.
The ADI-12 depression scale data identified nine patients with depressive disorders; the patients had satisfactory QoL outcomes on the MLDL. The results did not differ significantly between ALS patients and their relatives.
Thus, in agreement with other studies, QoL and emerging depression do not automatically coincide with patients' physical impairments of the patients. This "well-being paradox" is currently not well understood, and further studies are needed to optimize the treatment of patients through the course of disease progression.
肌萎缩侧索硬化症（ALS）是一种致命的神经退行性疾病，影响运动神经系统，目前尚无有效的治疗方法。因此，ALS 的治疗重点在于多学科团队的姑息治疗。已发表的关于情感成分和患者感知的生活质量（QoL）的研究结果以及对家庭成员/照顾者的比较报告仍然存在争议。
本研究纳入了 41 名 ALS 患者及其家属，采用 12 项肌萎缩侧索硬化症抑郁量表（ADI-12）和慕尼黑生活质量维度清单（MLDL）进行研究。使用肌萎缩侧索硬化症功能评定量表（ALSFRS-R）评估身体残疾。
ADI-12 抑郁量表数据确定了 9 名患有抑郁症的患者；MLDL 患者的生活质量满意度高。ALS 患者及其家属之间的结果无显著差异。
因此，与其他研究一致，生活质量和出现的抑郁并不一定与患者的身体残疾自动一致。这种“幸福悖论”目前尚不清楚，需要进一步研究通过疾病进展过程优化患者的治疗。
