Kübler Andrea, Winter Susanne, Ludolph Albert C, Hautzinger Martin, Birbaumer Niels
Institute of Medical Psychology and Behavioural Neurobiology, University of Tübingen, Tübingen, Germany.
Neurorehabil Neural Repair. 2005 Sep;19(3):182-93. doi: 10.1177/1545968305276583.
The authors aimed at investigating the occurrence of depression and the level of quality of life in patients with amyotrophic lateral sclerosis (ALS), an incurable neurodegenerative disease leading to progressive motor paralysis. They further wished to elucidate correlates of depression and quality of life, such as physical impairment, time since diagnosis, age, sex, and education. Additionally, the authors attempted to confirm previous studies that had shown quality of life to be underestimated by partners or caregivers.
To assess severity of depressive symptoms, the authors used Beck's Depression Inventory (BDI) and the ALS-Depression Inventory. To assess the patients' quality of life, they used the Scales to Assess Quality of Life. The same questionnaire was presented to partners or caregivers to estimate the patients' quality of life.
Severity of depressive symptoms was everything from not depressed to clinically relevant depressed. On average, quality of life was rated as satisfactory. Severity of depressive symptoms and quality of life showed a moderate positive relation to physical impairment and a weak negative relation to time since diagnosis. Partners or caregivers rated patients' quality of life significantly lower than did the patients.
Although depression occurs among ALS patients, it is not inevitable. Patients can remain free of depression and maintain a good quality of life. Depression should be treated, and patients have to be provided with unbiased information, including their medical and palliative care options.
作者旨在调查肌萎缩侧索硬化症（ALS）患者中抑郁症的发生率及生活质量水平，ALS是一种导致进行性运动麻痹的不可治愈的神经退行性疾病。他们进一步希望阐明抑郁症和生活质量的相关因素，如身体损伤、确诊后的时间、年龄、性别和教育程度。此外，作者试图证实先前的研究，这些研究表明伴侣或照料者会低估患者的生活质量。
为评估抑郁症状的严重程度，作者使用了贝克抑郁量表（BDI）和ALS抑郁量表。为评估患者的生活质量，他们使用了生活质量评估量表。向伴侣或照料者发放相同的问卷，以评估患者的生活质量。
抑郁症状的严重程度从无抑郁到临床相关抑郁不等。平均而言，生活质量被评为满意。抑郁症状的严重程度和生活质量与身体损伤呈中度正相关，与确诊后的时间呈弱负相关。伴侣或照料者对患者生活质量的评分显著低于患者本人。
虽然ALS患者中会出现抑郁症，但并非不可避免。患者可以不患抑郁症并保持良好的生活质量。应治疗抑郁症，并且必须向患者提供客观公正的信息，包括他们的医疗和姑息治疗选择。
