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Published in: Journal of Neurology 12/2020

Open Access 01-12-2020 | Amyotrophic Lateral Sclerosis | Original Communication

Disease progression but not physical state per se determines mental wellbeing in ALS

Authors: Cynthia R. Vázquez Medrano, Helena E. A. Aho-Özhan, Ulrike Weiland, Ingo Uttner, Albert C. Ludolph, Dorothée Lulé

Published in: Journal of Neurology | Issue 12/2020

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Abstract

Background

Studies provide inconclusive results on the question whether loss of mental wellbeing is actually associated with decline in physical function in amyotrophic lateral sclerosis (ALS). The purpose of this study was to determine predictors of mental wellbeing in ALS.

Methods

In total, n = 330 ALS patients were interviewed on parameters of mental wellbeing to evaluate the patients’ capacity of psychosocial adaptation. These parameters were global and subjective quality of life (QoL), and depressiveness. A subsample of n = 82 ALS patients were interviewed again within approximately a year (mean 14.34 ± 5.53 months).

Results

Both global and subjective QoL were stable, whereas depressiveness increased within the course of 1 year after diagnosis. Physical function decline was associated with mental wellbeing. Progression of physical disabilities and symptom duration were significant predictors of wellbeing in the sense that fast progression and short time since symptom onset (both indicating short time to adapt) were associated with low wellbeing.

Conclusions

There is evidence for subsamples in ALS with regard to mental wellbeing, which are mainly determined by clinical parameters. Those subjects being reported in the literature to present with high mental wellbeing are often long survivors. High progression rate and low physical function when attending the clinic for the first time should be red flags and need special attention in clinical counseling.
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Metadata
Title
Disease progression but not physical state per se determines mental wellbeing in ALS
Authors
Cynthia R. Vázquez Medrano
Helena E. A. Aho-Özhan
Ulrike Weiland
Ingo Uttner
Albert C. Ludolph
Dorothée Lulé
Publication date
01-12-2020
Publisher
Springer Berlin Heidelberg
Published in
Journal of Neurology / Issue 12/2020
Print ISSN: 0340-5354
Electronic ISSN: 1432-1459
DOI
https://doi.org/10.1007/s00415-020-10027-x

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