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Coping with amyotrophic lateral sclerosis: an integrative view
  1. Tamara Matuz1,
  2. Niels Birbaumer1,2,
  3. Martin Hautzinger3,
  4. Andrea Kübler1,4
  1. 1Institute of Medical Psychology and Behavioral Neurobiology, Eberhard-Karls-University Tübingen, Germany
  2. 2Istituto di Ricovero e Cura a Carattere Scientifico (IRCCS), Ospedale San Camillo, Venezia, Lido, Italy
  3. 3Department of Psychology, Eberhard-Karls-University Tübingen, Germany
  4. 4Department of Psychology I, Biological Psychology, Clinical Psychology, and Psychotherapy, University of Würzburg, Germany
  1. Correspondence to Dr Tamara Matuz, Eberhard-Karls-University Tübingen, Institute of Medical Psychology and Behavioral Neurobiology, Gartenstr. 29, Tübingen 72074, Germany; tamara.matuz{at}medizin.uni-tuebingen.de

Abstract

Objectives To identify predictors of psychosocial adjustment to motor neurone disease.

Methods A total of 27 individuals with a confirmed diagnosis of amyotrophic lateral sclerosis (ALS) participated in the study. The ALS functional rating scale mean score indicated a high physical impairment of the sample. Months since diagnosis varied between 4 and 129 (median 36). Adjustment outcomes were severity of depressive symptoms and individual quality of life (QoL). Predictors included social support, cognitive appraisal, coping strategies and illness parameters.

Results Multiple regression analysis revealed that approximately 60% of the variance of depression and QoL were accounted for by social support, coping strategies and cognitive appraisal. The degree of physical impairment did not explain any variance of the adjustment outcomes. The best predictors for the severity of depressive symptoms were perceived social support and appraisal of coping potential (internal locus of control) and for individual QoL perceived social support.

Conclusions The focus on medical issues in treatment of ALS is not sufficient. A palliative approach to ALS must equally imply advice with regards to adequate coping strategies, provide the adequate amount of disease- and support-related information at any one time, and encourage patients to seek social support. Sufficient medication and psychotherapy has to be provided for those patients who show depressive symptoms or disorder.

  • Psychosocial adjustment
  • ALS
  • coping
  • depression
  • quality of life
  • motor neuron disease

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Footnotes

  • Funding This study was supported by the Deutsche Forschungsgemeinschaft (DFG) through the Research Training Group ‘Bioethics’ at the Interdepartmental Centre for Ethics in the Sciences and Humanities (Interfakultären Zentrum für Ethik in den Wissenschaften, IZEW) of the University of Tübingen. Dr Matuz received research support in form of a PhD scholarship for 3 years.

  • Competing interests None.

  • Ethics approval This study was conducted with the approval of the Ethik-Kommission der Medizinischen Fakultät und am Universitätsklinikum Tübingen.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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