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Emotional adjustment in amyotrophic lateral sclerosis (ALS)

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Abstract

Despite the devastating motor impairment, a significant number of patients with amyotrophic lateral sclerosis (ALS) maintain a good psychosocial adjustment. Here we investigated whether this is specific for ALS or a more general characteristic of terminal disease. Psychosocial adjustment was investigated in 30 ALS patients, 29 cancer patients in palliative treatment and 29 age-, gender- and level of education-matched healthy controls. Subjective quality of life (sQoL), degree of depressive symptoms and coping were evaluated as measures of psychosocial adjustment. Personality factors were described. ALS and cancer patients showed a good psychosocial adjustment. Subjective QoL and depression did not differ significantly. Both patient groups presented a good sQoL. The level of mild depressive symptoms in both patient groups was similar and none showed clinically relevant depression. ALS patients expressed fewer active coping strategies than cancer patients which were explained by gender differences. Both patient groups showed comparable psychosocial adjustment to their disease. Overall, in terminally ill patients the psychological response to the prognosis is not associated with neurobiological changes (e.g., associated with subclinical deficits in ALS) or with physical decline.

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Acknowledgments

Supported by the Deutsche Forschungsgemeinschaft (DFG), Ministry of Education and Research (BMBF), Bernstein Center for Computational Neuroscience, European Community grants (EU) and European Research Council (ERC). We would like to thank the physicians of the outpatient clinic of the department of Neurology, in specific Corinna Hendrich and Anne Sperfeld, and the physicians of the outpatient clinic of the department of Oncology at the University of Ulm for supporting us with the recruitment of patients, and the organizing committee for senior education at the University of Ulm (Zentrum für angewandte wissenschaftliche Weiterbildung, ZAWIW) for the recruitment of healthy controls. We are greatly indebted to all patients and participants who participated in this study.

Conflict of interest

The authors declare that they have no conflict of interest.

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Authors and Affiliations

  1. Section of Neurophysiology, University of Ulm, Albert-Einstein-Allee 47, 89081, Ulm, Germany

    Dorothée Lulé

  2. Institute of Medical Psychology and Behavioral Neurobiology, Eberhard-Karls-University of Tübingen, Tübingen, Germany

    Dorothée Lulé & Niels Birbaumer

  3. Department of Neurology, University of Ulm, Ulm, Germany

    Dorothée Lulé, Sandra Pauli, Ertan Altintas, Ulrike Singer, Ingo Uttner & Albert C. Ludolph

  4. Klinik für Pneumologie, Beatmungsmedizin, und Allgemeine Innere Medizin, Krankenhaus vom Roten Kreuz, Stuttgart/Bad-Cannstadt, Germany

    Thomas Merk

  5. Ospedale San Camillo, IRCCS, Venezia, Italy

    Niels Birbaumer

Authors
  1. Dorothée Lulé
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  2. Sandra Pauli
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  3. Ertan Altintas
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  4. Ulrike Singer
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  5. Thomas Merk
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  6. Ingo Uttner
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  7. Niels Birbaumer
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  8. Albert C. Ludolph
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Correspondence to Dorothée Lulé.

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Lulé, D., Pauli, S., Altintas, E. et al. Emotional adjustment in amyotrophic lateral sclerosis (ALS). J Neurol 259, 334–341 (2012). https://doi.org/10.1007/s00415-011-6191-x

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  • DOI: https://doi.org/10.1007/s00415-011-6191-x

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