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Severity of Depressive Symptoms and Quality of Life in Patients with Amyotrophic Lateral Sclerosis

Institute of Medical Psychology and Behavioural Neurobiology, University of Tübingen, Tübingen, Germany, andrea.kuebler{at}uni-tuebingen.de

Susanne Winter

Department of Neurology, Municipal Hospital Munich Harlaching, Munich, Germany

Albert C. Ludolph

Department of Neurology, University of Ulm, Ulm, Germany

Martin Hautzinger

Department of Psychology, University of Tübingen, Tübingen, Germany

Niels Birbaumer

Institute of Medical Psychology and Behavioural Neurobiology, University of Tübingen, Tübingen, Germany, Center for Cognitive Neuroscience, University of Trento, Italy

Objectives. 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. Methods. 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. Results. 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. Conclusions. 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.

Key Words: Amyotrophic lateral sclerosis • Depression • Quality of life • Life-sustaining treatment • End-of-life decision

Neurorehabilitation and Neural Repair, Vol. 19, No. 3, 182-193 (2005)
DOI: 10.1177/1545968305276583


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