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Life can be worth living in locked-in syndrome
Open accessAbstract
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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Ciećwierska, K., Lulé, D. E., Helczyk, O., Nieporęcki, K., Bielecki, M., Baader, S., Ludolph, A. C., & Kuźma‐Kozakiewicz, M. (2023) · Quality of Life Research · doi:10.1007/s11136-023-03383-4 · Cited by 4
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Barć, K., Finsel, J., Helczyk, O., Baader, S., Aho-Özhan, H. E. A., Ludolph, A. C., Lulé, D. E., & Kuźma‐Kozakiewicz, M. (2024) · Brain and Behavior · doi:10.1002/brb3.3243 · Cited by 4
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Aminoff, M. J. (2014) · Elsevier eBooks · doi:10.1016/b978-0-12-407710-2.00062-x
Locked-in syndrome in Sweden: an explorative study of persons who underwent rehabilitation
Svernling, K. (2016) · Gothenburg University Publications Electronic Archive (Gothenburg University)
Aiyer, S., Arnott, S., Sharbain, R., Wang, Q., & Wen, H. (2018) · ACM/IEEE International Conference on Human-Robot Interaction (HRI) · doi:10.1145/3173386.3177825
“However, previous research into the quality of life of MND patients reveals that family matters most to them [11].”
BackgroundEen hersenimplantaat voor communicatie
Vansteensel, M. J., Aarnoutse, E. J., Freudenburg, Z. V., & Ramsey, N. F. (2018) · Neuropraxis · doi:10.1007/s12474-018-00189-w
Vicini, A. (2012) · Journal of the Society of Christian Ethics · doi:10.1353/sce.2012.0012
Brain-computer interface communication for a locked in child with epileptic encephalopathy
Zewdie, E., Jadavji, Z., Kaketsis, D., & Kirton, A. (2020) · TUGraz OPEN Library (Graz University of Technology) · doi:10.3217/978-3-85125-682-6-27
“It can be caused by acute injuries (e.g., brainstem stroke, which is the most frequent cause of LIS) to chronic causes (e.g., amyotrophic lateral sclerosis; ALS)[1] that render the motor system non-functional[2].”
BackgroundFür Logopäden relevante neurologische Funktionsstörungen
Winter, R., & Bischoff, B. (2019) · Springer eBooks · doi:10.1007/978-3-662-58310-4_1
Lulé, D. E., & Kuźma‐Kozakiewicz, M. (2020) · Neurology · doi:10.1212/wnl.0000000000010124
Self-citationGlowinsky, S. (2016) · TSpace (University of Toronto)
Moral Status and the Consciousness Criterion
Johnson, L. S. M. (2021) · Oxford University Press eBooks · doi:10.1093/med/9780190943646.003.0007 · Cited by 2
Disorders of Consciousness and the Disability Critique
Johnson, L. S. M. (2021) · Oxford University Press eBooks · doi:10.1093/med/9780190943646.003.0008
Johnson, L. S. M. (2021) · Oxford University Press eBooks · doi:10.1093/med/9780190943646.003.0004
Johnson, L. S. M. (2021) · Oxford University Press eBooks · doi:10.1093/med/9780190943646.003.0001
Johnson, L. S. M. (2021) · Oxford University Press eBooks · doi:10.1093/med/9780190943646.003.0002
Johnson, L. S. M. (2021) · Oxford University Press eBooks · doi:10.1093/med/9780190943646.003.0005
Johnson, L. S. M. (2021) · Oxford University Press eBooks · doi:10.1093/med/9780190943646.003.0003
Arnold, R. M. (2019) · Faculty Opinions – Post-Publication Peer Review of the Biomedical Literature · doi:10.3410/f.736381699.793566638
Aminoff, M. J. (2021) · Elsevier eBooks · doi:10.1016/b978-0-12-819306-8.00063-0
Bellieni, C. V. (2022) · Springer eBooks · doi:10.1007/978-3-030-96256-2_12
Clinical Neurophysiology in the Prognostic and Diagnostic Evaluation of Disorders of Consciousness
Maciejewicz, B. (2022) · Journal of Regenerative Biology and Medicine · doi:10.37191/mapsci-2582-385x-4(4)-117
Development and Clinical Application of BMI
Yanagisawa, T. (2022) · Japanese Journal of Neurosurgery · doi:10.7887/jcns.31.558
Palliative care and locked-in syndrome: Brazilian case report
Othero, M. B., & Rocha, J. A. (2022) · Hospice and Palliative Medicine International Journal · doi:10.15406/hpmij.2022.05.00205
Accessible Operation Methods of Coffee Machines
Wendt, T. M., Fischer-Janzen, A., Ponomarjova, K.-M., Zähringer, K., Schnebel, A., & Laerhoven, K. V. (2024) · International Conference on PErvasive Technologies Related to Assistive Environments (PETRA) · doi:10.1145/3652037.3663900
“However, involvement in social activities such as cooking has been shown to improve the quality of life (QoL) of people with tetraplegia [5].”
Background
Metadata
- 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.
- Venue
- Progress in Brain Research
- Publisher
- Elsevier
- Published
- 2009
- Volume
- 177
- Pages
- 339-351
- ISSN
- 0079-6123 (ISSN-L)
- 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
- bronze
- doi.org
- 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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