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Life can be worth living in locked-in syndrome

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Lulé, D., Zickler, C., Häcker, S., Bruno, M.A., Demertzi, A., Pellas, F., Laureys, S., Kübler, A.·2009·Progress in Brain Research
DOI 10.1016/s0079-6123(09)17723-3
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Abstract

The locked-in syndrome (LIS) describes patients who are awake and conscious but severely deefferented leaving the patient in a state of almost complete immobility and loss of verbal communication. The etiology ranges from acute (e.g., brainstem stroke, which is the most frequent cause of LIS) to chronic causes (e.g., amyotrophic lateral sclerosis; ALS). In this article we review and present new data on the psychosocial adjustment to LIS. We refer to quality of life (QoL) and the degree of depressive symptoms as a measure of psychosocial adjustment. Various studies suggest that despite their extreme motor impairment, a significant number of LIS patients maintain a good QoL that seems unrelated to their state of physical functioning. Likewise, depression is not predicted by the physical state of the patients. A successful psychological adjustment to the disease was shown to be related to problem-oriented coping strategies, like seeking for information, and emotional coping strategies like denial--the latter may, nevertheless, vary with disease stage. Perceived social support seems to be the strongest predictor of psychosocial adjustment. QoL in LIS patients is often in the same range as in age-matched healthy individuals. Interestingly, there is evidence that significant others, like primary caregivers or spouses, rate LIS patients' QoL significantly lower than the patients themselves. With regard to depressed mood, ALS patients without symptoms focus significantly more often on internal factors that can be retained in the course of the disease contrary to patients with depressive symptoms who preferably name external factors as very important, such as health, which will degrade in the course of the disease. Typically, ALS patients with a higher degree of depressive symptoms experience significantly less "very pleasant" situations. The herein presented data strongly question the assumption among doctors, health-care workers, lay persons, and politicians that severe motor disability necessarily is intolerable and leads to end-of-life decisions or euthanasia. Existing evidence supports that biased clinicians provide less-aggressive medical treatment in LIS patients. Thus, psychological treatment for depression, effective strategies for coping with the disease, and support concerning the maintenance of the social network are needed to cope with the disease. Novel communication devices and assistive technology now offers an increasing number of LIS patients to resume a meaningful life and an active role in society.

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  1. Badger, T. A. (2001). Depression, psychological resources, and health-related quality of life. Journal of Clinical Geropsy chology, 7, 189-200.
  2. Ghorbel, S. (unpublished). Statut fonctionnel et qualite ´ de vie chez le locked-in syndrome a domicile. In: DEA Motricite ´ Humaine et Handicap, Laboratory of Biostatistics, Epide miology and Clinical Research. Dissertation in Medicine. Universite ´ Jean Monnet Saint-Etienne, Montpellier, France.
  3. Ha ¨cker, S. (unpublished). Depressivita ¨t und subjektive Lebens qualita ¨t bei schwerster ko ¨rperlicher Beeintra ¨chtigung -Eine empirsche Arbeit u ¨ber Patienten mit amyotropher Lateralsk lerose (Depression and subjective quality of life given severest physical impairment -An empirical study on patients with amotrophic lateralsclerosis). Unpublished diploma thesis in Psychology. University of Tu ¨ bingen, Germany.
  4. Ku ¨ bler, A., Furdea, A., Halder, S., & Ho ¨ sle, A. (2008). Brain painting-BCI meets art. In G. R. Mu ¨ ller-Putz, C. Brunner, R. Leeb, G. Pfurtscheller, & C. Neuper (Eds.), 4th International Brain-Computer Interface Workshop and Training Course (pp. 361-366). Austria: Verlag der Tech nischen Universita ¨t Graz: Graz University of Technology.
  5. Nedele, P. (unpublished). Kognitionen, Emotionen und Bewa ¨ltigung im Alltag von Patienten mit ALS: Eine empirische Arbeit bei Patienten mit amyotropher Lateralsk lerose (ALS). (Cognition, emotions and coping in daily life: An empirical study in patients with amyotrophic lateral sclerosis (ALS). Unpublished diploma thesis of Psychology. University of Tu ¨ bingen, Germany.

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Authors
Lulé, D., Zickler, C., Häcker, S., Bruno, M. A., Demertzi, A., Pellas, F., Laureys, S., & Kübler, A.
Affiliations
  • University of Liège (BE)
  • University of Tübingen (DE)
  • Centre Hospitalier Universitaire de Nîmes (FR)
  • University of Würzburg (DE)
Corresponding author
Lulé, D.
ORCID
Venue
Progress in Brain Research
Publisher
Elsevier
Published
2009
Volume
177
Pages
339-351
ISSN
0079-6123 (ISSN-L)
DOI
10.1016/s0079-6123(09)17723-3
OpenAlex
W1531824716
Cited by
217
References
82
Citations by year
2026: 8 · 2025: 10 · 2024: 12 · 2023: 12 · 2022: 8 · 2021: 23 · 2020: 12 · 2019: 10 · 2018: 10 · 2017: 11 · 2016: 13 · 2015: 18 · 2014: 18 · 2013: 21 · 2012: 9
FWCI
29.40
Type
book chapter
Language
en
Open access
Locations
  • Progress in brain research (publishedVersion)
  • PubMed (publishedVersion)
  • Open Repository and Bibliography (University of Liège) (submittedVersion, other-oa)
Funders
  • James S. McDonnell Foundation
  • Mind Science Foundation
  • European Commission
Topics
  • Health Sciences › Medicine › Rehabilitation › Stroke Rehabilitation and Recovery
  • Health Sciences › Medicine › Oncology › Cancer survivorship and care
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Aging, Health, and Disability
Keywords
locked-in syndrome, quality of life, depression, psychosocial adjustment, coping strategies, social support, amyotrophic lateral sclerosis, brainstem infarction, motor impairment, end-of-life decisions, assistive communication technology
MeSH terms
Adaptation, Psychological, Consciousness Disorders, Depression, Persons with Disabilities, Humans, Quadriplegia, Quality of Life, Surveys and Questionnaires

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