Lebensqualität und Depressivität bei der ALS – eine Frage der Perspektive

Zusammenfassung

Die Amyotrophe Lateralsklerose (ALS) ist eine terminale und progressive multisystemische Erkrankung. Verlust der Mobilität und der verbalen Kommunikationsfähigkeit stellen die Kardinalsymptome dar. Verschiedene Studien der letzten Jahre zeigen, dass trotz der Fatalität der Erkrankung die Patienten ein gutes Wohlergehen angeben. Demnach ist eine psychosoziale Anpassung bei der ALS möglich. Parameter des guten Wohlergehens sind eine positive subjektive und globale Lebensqualität und eine gegenüber der gesunden Bevölkerung nur leicht erhöhte Depressionsrate. Trotz einer signifikanten Reduzierung der körperlichen Funktion kann das Wohlergehen der Patienten konstant positiv verlaufen. Pa­tienten zeigen im Verlauf eine Veränderung ihrer lebensqualitätsbestimmenden Faktoren: Familie wird von 100% der Patienten genannt, Kommunikation gewinnt an Bedeutung. Angehörige und gesunde Außenstehende, die den Prozess der Anpassung aus ihrer Perspektive nur unzureichend erfassen können, unterschätzen das Wohlergehen der Patienten. Lebensqualität wird unterschätzt und Depressivität wird überschätzt. Die bei der ALS beschriebenen kognitiven Defizite und damit einhergehend eine reduzierte Reflexionsfähigkeit könnten als mögliche Ursache für das gute Wohlergehen angenommen werden, die derzeitige Evidenzlage unterstützt dies jedoch nicht. Das mögliche gute Wohlergehen und die Diskrepanz von Fremd- und Selbsterleben sind wichtige Faktoren, die in Bezug auf Entscheidungen bezüglich Lebensverlängerung und -verkürzung mit in Betracht gezogen werden müssen.

Abstract

Amyotrophic lateral sclerosis (ALS) is a terminal and progressive disease which affects different parts of the nervous system. Loss of mobility and verbal communication are the most obvious symptoms of ALS. Recent studies have provided evidence that patients experience a satisfying well-being despite the fatality of the disease. Accordingly, successful psychosocial adaptation is possible in ALS. Parameters of well-being are a positive subjective and global quality of life and an only mildly increased depression rate compared to the average population. Despite the decline of physical function, positive well-being can be stable throughout the course of ALS. Patients present a response shift in parameters which determine their quality of life: family is named by 100% of ALS patients and communication becomes increasingly important. Caregivers and healthy outsiders are unable to anticipate this good well-being because they can hardly anticipate the process of psychosocial adaptation from their own perspective. Quality of life is underestimated and depression is overrated. Cognitive deficits which are known to be present in up to 50% of patients may be confounding factors of well-being, however, up to now there is no evidence of lack of association. The positive well-being and the discrepancy between self-rating and peer assessment are important issues which need to be regarded in the context of decisions to prolong or shorten life in ALS.

Schlüsselwörter

ALS - Lebensqualität - Depression - Kognition - Fremdbeurteilung

Key words

ALS - quality of life - depression - cognition - peer assessment

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