Assessment of needs, psychological impact and quality of life in families of patients with locked-in syndrome

Lugo, Zulay; Pellas, F.; Blandin, Véronique; Laureys, Steven; Gosseries, Olivia

doi:10.1080/02699052.2017.1347277

Cited by 11 publications

(7 citation statements)

References 30 publications

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“…In severe patients who can move only with the eyes, it is very important to confirm whether the eyes are open or closed. Diseases that cause this condition include complete cervical spinal cord injury, amyotrophic lateral sclerosis, and locked-in-syndrome 61011). These patients need constant caregivers.…”

Section: Discussionmentioning

confidence: 99%

Application of Deep Learning System into the Development of Communication Device for Quadriplegic Patient

Lee

Kang

Choi

et al. 2019

Korean J Neurotrauma

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ObjectiveIn general, quadriplegic patients use their voices to call the caregiver. However, severe quadriplegic patients are in a state of tracheostomy, and cannot generate a voice. These patients require other communication tools to call caregivers. Recently, monitoring of eye status using artificial intelligence (AI) has been widely used in various fields. We made eye status monitoring system using deep learning, and developed a communication system for quadriplegic patients can call the caregiver.MethodsThe communication system consists of 3 programs. The first program was developed for automatic capturing of eye images from the face using a webcam. It continuously captured and stored 15 eye images per second. Secondly, the captured eye images were evaluated for open or closed status by deep learning, which is a type of AI. Google TensorFlow was used as a machine learning tool or library for convolutional neural network. A total of 18,000 images were used to train deep learning system. Finally, the program was developed to utter a sound when the left eye was closed for 3 seconds.ResultsThe test accuracy of eye status was 98.7%. In practice, when the quadriplegic patient looked at the webcam and closed his left eye for 3 seconds, the sound for calling a caregiver was generated.ConclusionOur eye status detection software using AI is very accurate, and the calling system for the quadriplegic patient was satisfactory.

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Section: Discussionmentioning

confidence: 99%

Application of Deep Learning System into the Development of Communication Device for Quadriplegic Patient

Lee

Kang

Choi

et al. 2019

Korean J Neurotrauma

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“…A number of common needs among caregivers have been shown in the last 40 years. In particular, honest and accurate communication of information regarding the patients' medical condition, treatment, and prognosis are reportedly the most important needs for patients' entourage in acute and post-acute states of brain injury 135,[137][138][139][140][141] . Further, kind and clear explanations, discussion of realistic expectations, emotional support, financial counselling, and advice about community resources are factors on which patients' families and support structures depend 140 .…”

Section: The Relevance Of the Proposed Indicators Of Consciousness To...mentioning

confidence: 99%

Advancing the science of consciousness: from ethics to clinical care

Farisco,

Evers,

Annen

et al. 2023

Preprint

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Significant advances in the scientific investigation of the neurobiology of consciousness have been slow to be translated into clinical settings, limited by factors of conceptual (e.g., what is consciousness?), methodological (e.g., how to identify reliable indicators of consciousness?), and technical (e.g., how to improve sensitivity and specificity of the technological identification of consciousness?) nature. In the present paper we aim at reducing the gap between research, clinical practice, patients’ and their caregivers’ needs regarding disorders of consciousness. By implementing a multidisciplinary and multidimensional approach, the paper focuses on disorders of consciousness: it starts from the review of some of the most promising measures of consciousness from brain activity (i.e., spectral measures, measures of functional connectivity, complexity-based measures). Next the paper introduces brain responses to illusions as a new indicator of consciousness (i.e., a feature that facilitates the attribution of consciousness), and illustrates the clinical operationalization of the indicators of consciousness through the case of virtual reality. Finally, the paper analyzes a set of urgent ethical issues and describes a model for assessing and dealing with those issues, concluding by elaborating key recommendations for improving the clinical treatment of patients with disorders of consciousness through a better translation of research into clinics.

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“…245 Caregivers of LiS patients rate the need for information, including information on possibilities for communication, as the most important; they often experience feelings of anxiety and depression, and the need for emotional support is frequently not met. 246 The importance of respecting the patients' autonomy, supporting their right to live and allowing the patient to participate in treatment decisions (and therefore determining his or her decisionmaking capacity) have to be stressed. 171 Cases of requested euthanasia 247 or withdrawal of invasive ventilation 248 in LiS patients have been reported, a subject of controversial discussion.…”

Section: Quality Of Life Ethical Considerations and Future Perspectivesmentioning

confidence: 99%

Section: Quality Of Life Ethical Considerations and Future Perspectivesmentioning

confidence: 99%

Locked-in syndrome revisited

Schnetzer

McCoy

Bergmann

et al. 2023

Ther Adv Neurol Disord

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The locked-in syndrome (LiS) is characterized by quadriplegia with preserved vertical eye and eyelid movements and retained cognitive abilities. Subcategorization, aetiologies and the anatomical foundation of LiS are discussed. The damage of different structures in the pons, mesencephalon and thalamus are attributed to symptoms of classical, complete and incomplete LiS and the locked-in plus syndrome, which is characterized by additional impairments of consciousness, making the clinical distinction to other chronic disorders of consciousness at times difficult. Other differential diagnoses are cognitive motor dissociation (CMD) and akinetic mutism. Treatment options are reviewed and an early, interdisciplinary and aggressive approach, including the provision of psychological support and coping strategies is favoured. The establishment of communication is a main goal of rehabilitation. Finally, the quality of life of LiS patients and ethical implications are considered. While patients with LiS report a high quality of life and well-being, medical professionals and caregivers have largely pessimistic perceptions. The negative view on life with LiS must be overthought and the autonomy and dignity of LiS patients prioritized. Knowledge has to be disseminated, diagnostics accelerated and technical support system development promoted. More well-designed research but also more awareness of the needs of LiS patients and their perception as individual persons is needed to enable a life with LiS that is worth living.

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Assessment of needs, psychological impact and quality of life in families of patients with locked-in syndrome

Abstract: Receiving accurate medical information is the most important need for family of patients with LIS and their quality of life is correlated with the fulfilment of their needs.

Cited by 11 publications

References 30 publications

Application of Deep Learning System into the Development of Communication Device for Quadriplegic Patient

Application of Deep Learning System into the Development of Communication Device for Quadriplegic Patient

Advancing the science of consciousness: from ethics to clinical care

Locked-in syndrome revisited

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