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French Survey on Pain Perception and Management in Patients with Locked-In Syndrome

Patients with locked-in syndrome (LIS) may suffer from pain, which can significantly affect their daily life and well-being. In this study, we aim to investigate the presence and the management of pain in LIS patients. Fifty-one participants completed a survey collecting socio-demographic informatio...

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Autores principales: Bonin, Estelle A. C., Delsemme, Zoé, Blandin, Véronique, Alnagger, Naji L., Thibaut, Aurore, Faymonville, Marie-Elisabeth, Laureys, Steven, Vanhaudenhuyse, Audrey, Gosseries, Olivia
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8947195/
https://www.ncbi.nlm.nih.gov/pubmed/35328322
http://dx.doi.org/10.3390/diagnostics12030769
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author Bonin, Estelle A. C.
Delsemme, Zoé
Blandin, Véronique
Alnagger, Naji L.
Thibaut, Aurore
Faymonville, Marie-Elisabeth
Laureys, Steven
Vanhaudenhuyse, Audrey
Gosseries, Olivia
author_facet Bonin, Estelle A. C.
Delsemme, Zoé
Blandin, Véronique
Alnagger, Naji L.
Thibaut, Aurore
Faymonville, Marie-Elisabeth
Laureys, Steven
Vanhaudenhuyse, Audrey
Gosseries, Olivia
author_sort Bonin, Estelle A. C.
collection PubMed
description Patients with locked-in syndrome (LIS) may suffer from pain, which can significantly affect their daily life and well-being. In this study, we aim to investigate the presence and the management of pain in LIS patients. Fifty-one participants completed a survey collecting socio-demographic information and detailed reports regarding pain perception and management (type and frequency of pain, daily impact of pain, treatments). Almost half of the LIS patients reported experiencing pain (49%) that affected their quality of life, sleep and cognition. The majority of these patients reported that they did not communicate their pain to clinical staff. Out of the 25 patients reporting pain, 18 (72%) received treatment (60% pharmacological, 12% non-pharmacological) and described the treatment efficacy as ‘moderate’. In addition, 14 (56%) patients were willing to try other non-pharmacological treatments, such as hypnosis or meditation. This study provides a comprehensive characterization of pain perception in LIS patients and highlights the lack of guidelines for pain detection and its management. This is especially pertinent given that pain affects diagnoses, by either inducing fatigue or by using pharmacological treatments that modulate the levels of wakefulness and concentration of such patients.
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spelling pubmed-89471952022-03-25 French Survey on Pain Perception and Management in Patients with Locked-In Syndrome Bonin, Estelle A. C. Delsemme, Zoé Blandin, Véronique Alnagger, Naji L. Thibaut, Aurore Faymonville, Marie-Elisabeth Laureys, Steven Vanhaudenhuyse, Audrey Gosseries, Olivia Diagnostics (Basel) Article Patients with locked-in syndrome (LIS) may suffer from pain, which can significantly affect their daily life and well-being. In this study, we aim to investigate the presence and the management of pain in LIS patients. Fifty-one participants completed a survey collecting socio-demographic information and detailed reports regarding pain perception and management (type and frequency of pain, daily impact of pain, treatments). Almost half of the LIS patients reported experiencing pain (49%) that affected their quality of life, sleep and cognition. The majority of these patients reported that they did not communicate their pain to clinical staff. Out of the 25 patients reporting pain, 18 (72%) received treatment (60% pharmacological, 12% non-pharmacological) and described the treatment efficacy as ‘moderate’. In addition, 14 (56%) patients were willing to try other non-pharmacological treatments, such as hypnosis or meditation. This study provides a comprehensive characterization of pain perception in LIS patients and highlights the lack of guidelines for pain detection and its management. This is especially pertinent given that pain affects diagnoses, by either inducing fatigue or by using pharmacological treatments that modulate the levels of wakefulness and concentration of such patients. MDPI 2022-03-21 /pmc/articles/PMC8947195/ /pubmed/35328322 http://dx.doi.org/10.3390/diagnostics12030769 Text en © 2022 by the authors. https://creativecommons.org/licenses/by/4.0/Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
spellingShingle Article
Bonin, Estelle A. C.
Delsemme, Zoé
Blandin, Véronique
Alnagger, Naji L.
Thibaut, Aurore
Faymonville, Marie-Elisabeth
Laureys, Steven
Vanhaudenhuyse, Audrey
Gosseries, Olivia
French Survey on Pain Perception and Management in Patients with Locked-In Syndrome
title French Survey on Pain Perception and Management in Patients with Locked-In Syndrome
title_full French Survey on Pain Perception and Management in Patients with Locked-In Syndrome
title_fullStr French Survey on Pain Perception and Management in Patients with Locked-In Syndrome
title_full_unstemmed French Survey on Pain Perception and Management in Patients with Locked-In Syndrome
title_short French Survey on Pain Perception and Management in Patients with Locked-In Syndrome
title_sort french survey on pain perception and management in patients with locked-in syndrome
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8947195/
https://www.ncbi.nlm.nih.gov/pubmed/35328322
http://dx.doi.org/10.3390/diagnostics12030769
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