Psychother Psychosom Med Psychol 2019; 69(09/10): 372-381
DOI: 10.1055/a-0806-7862
Übersicht
© Georg Thieme Verlag KG Stuttgart · New York

Psychosoziale Versorgung bei Patienten mit Amyotropher Lateralsklerose: Ein narrativer Review

Psychosocial Care For Patients With Amyotrophic Lateral Sclerosis: A Narrative Review
Peter Esser
1   Abteilung für Medizinische Psychologie und Medizinische Soziologie, Universitätsklinikum Leipzig
,
Moritz Metelmann
2   Klinik und Poliklinik für Neurologie, Universitätsklinikum Leipzig
,
Tim Hartung
1   Abteilung für Medizinische Psychologie und Medizinische Soziologie, Universitätsklinikum Leipzig
,
Joseph Claßen
2   Klinik und Poliklinik für Neurologie, Universitätsklinikum Leipzig
,
Anja Mehnert
1   Abteilung für Medizinische Psychologie und Medizinische Soziologie, Universitätsklinikum Leipzig
,
Susan Koranyi
1   Abteilung für Medizinische Psychologie und Medizinische Soziologie, Universitätsklinikum Leipzig
› Author Affiliations
Further Information

Publication History

eingereicht 22 June 2018

akzeptiert 16 October 2018

Publication Date:
07 February 2019 (online)

Zusammenfassung

Dieser narrative Review soll einen breiten Überblick zur psychosozialen Belastung bei Patienten mit Amyotropher Lateralsklerose (ALS) und diesbezüglichen psychotherapeutischen Interventionen vermitteln. Die ALS ist eine unheilbare, schnell fortschreitende neurodegenerative Erkrankung, in deren Verlauf es zur Schwächung bzw. zum Schwund fast aller Muskeln des Körpers kommt: dies macht schließlich nicht nur die Bewegung, sondern auch die Nahrungsaufnahme, Atmung und Kommunikation des Patienten unmöglich. Neben den vorwiegend motorischen Symptomen kommt es auch zu kognitiv-emotionalen bzw. verhaltensbezogenen Veränderungen und Störungen, die die Lebensqualität der Betroffenen zusätzlich stark beeinträchtigen können. Entsprechend dieser schweren Symptomatik und der negativen Prognose kann es zu ausgeprägten psychosozialen Belastungen einschließlich erhöhter Depressivität und Ängstlichkeit, Hoffnungslosigkeit bis hin zu Sterbewunsch und Suizidalität kommen. Viele Studien weisen auf den entscheidenden Einfluss psychosozialer Aspekte bei der Aufrechterhaltung der Lebensqualität bei ALS-Patienten hin. Dennoch ist der Forschungsstand zu psychotherapeutischen Interventionen bei ALS-Patienten bislang äußerst dürftig. Neben dem generellen Mangel an Interventionen und methodischen Schwachstellen bei der Evaluation ihrer Wirksamkeit lassen sich in den Interventionen nur wenig Inhalte finden, die dem palliativen Charakter sowie den spezifischen Symptomen der Erkrankung wie z. B. der eingeschränkten Kommunikation oder Problemen bei der Emotionsregulation Rechnung tragen. Weitere Forschung im Bereich psychosozialer Interventionen bei ALS-Patienten ist daher von hoher Relevanz. Wissenschaftliche Ansätze könnten z. B. darin bestehen, die bei anderen schwerwiegenden Erkrankungen als wirksam erwiesenen Therapiekonzepte auf die spezielle Gruppe von ALS-Patienten zu übertragen. Neben einer inhaltlichen Anpassung sollte auch die Anwendbarkeit der Therapieverfahren mit alternativen Kommunikationswegen, z. B. via Sprachcomputer oder Brain-Computer-Interfaces, untersucht werden.

Abstract

This narrative review gives a broad summary of the psychosocial strain in patients with amyotrophic lateral sclerosis (ALS) and psychotherapeutic interventions addressing these issues. ALS is a fatal, rapidly progressing neurodegenerative disease, which leads to weakness and atrophy in almost all muscles of the body, resulting in impairment and finally inability in all domains of daily life including mobility, food intake, respiration or communication. In addition to these mainly motor impairments, most patients are also affected by severe cognitive-emotional and behavioral alterations and deficits which may lead to additional distress. Due to the severe symptomatology and poor diagnosis, ALS can lead to significant psychosocial strain including heightened levels of depressive and anxious symptomatology, hopelessness and even the wish for hastened death. A large body of research demonstrates the strong effect of psychosocial aspects on quality of life (QoL) in ALS patients. Nevertheless, research on psychotherapeutic interventions for patients with ALS is very sparse to date. Besides the general lack of interventions and the methodological limitations in testing their efficacy, few of these therapeutic concepts incorporate the palliative character and the specific symptomatology of the disease such as impaired communication or problems with emotion control. Further research on psychosocial interventions in this patient group is therefore urgently needed. Future research could aim to adapt therapy programs that already have been proven to be effective in other populations with advanced diseases. Such research should also test the applicability of the therapy models using alternative communication including computer with a voice synthesizer or brain-computer-interfaces.

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