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Depression and QOL in patients with ALS: how do self-ratings and ratings by relatives differ?

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Abstract

Background

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.

Methods

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.

Results

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.

Conclusions

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.

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Authors and Affiliations

  1. Department of Neurology, Ruhr-University Bochum, BG-Kliniken Bergmannsheil GmbH, Bochum, Germany

    Torsten Grehl, Mirjam Rupp, Paula Budde & Martin Tegenthoff

  2. Institute of the History, Philosophy and Ethics of Medicine, Ulm University, Ulm, Germany

    Heiner Fangerau

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  1. Torsten Grehl
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  2. Mirjam Rupp
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  3. Paula Budde
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  4. Martin Tegenthoff
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  5. Heiner Fangerau
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Correspondence to Torsten Grehl.

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Grehl, T., Rupp, M., Budde, P. et al. Depression and QOL in patients with ALS: how do self-ratings and ratings by relatives differ?. Qual Life Res 20, 569–574 (2011). https://doi.org/10.1007/s11136-010-9781-7

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