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Updated: Jul 23, 2026

Assessment and Communication for People with Disorders of Consciousness
Published on: August 1, 2017
Locked-in syndrome revisited
Laura Schnetzer1,2,3,4, Mark McCoy5, Jürgen Bergmann5
1Department of Neurology, Neurological Intensive Care and Neurorehabilitation, Christian Doppler Medical Centre, Paracelsus Medical University, Ignaz-Harrer-Straße 79, A-5020 Salzburg, Austria.
Locked-in syndrome (LiS) involves paralysis with preserved cognition. Despite patient-reported high quality of life, a shift in perception is needed to prioritize autonomy and dignity.
Area of Science:
- Neurology
- Neuroscience
- Rehabilitation Medicine
Background:
- Locked-in syndrome (LiS) presents as quadriplegia with intact consciousness and cognition, distinguished by preserved vertical eye movements.
- Understanding the anatomical basis in the pons, mesencephalon, and thalamus is crucial for differentiating LiS subtypes and related conditions.
- Differential diagnoses include cognitive motor dissociation and akinetic mutism, complicating clinical assessment.
Purpose of the Study:
- To review the subcategorization, etiologies, and anatomical underpinnings of Locked-in syndrome.
- To discuss current treatment strategies, emphasizing early, interdisciplinary, and aggressive rehabilitation.
- To explore the quality of life and ethical considerations for LiS patients, contrasting patient perspectives with those of healthcare professionals.
Main Methods:
- Literature review of LiS subcategorization, etiologies, and neuroanatomical correlates.
- Analysis of treatment options, rehabilitation goals, and communication strategies.
- Examination of quality of life reports and ethical implications, including patient-reported outcomes and professional perceptions.
Main Results:
- LiS is categorized into classical, complete, incomplete, and locked-in plus syndromes based on neuroanatomical damage.
- An early, interdisciplinary approach focusing on communication and psychological support is recommended for rehabilitation.
- A significant disparity exists between LiS patients' high self-reported quality of life and the generally pessimistic views of medical professionals and caregivers.
Conclusions:
- Prioritizing patient autonomy and dignity is essential, challenging negative perceptions of life with LiS.
- Disseminating knowledge, accelerating diagnostics, and promoting technical support are vital for improving care.
- Further research and increased awareness are necessary to ensure a fulfilling life for individuals with LiS.
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