Article (Scientific journals)
French Survey on Pain Perception and Management in Patients with Locked-In Syndrome.
Bonin, Estelle; Delsemme, Zoé; Blandin, Véronique et al.
2022In Diagnostics, 12 (3), p. 769
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Keywords :
guidelines; locked-in syndrome; pain; quality of life; survey; Clinical Biochemistry
Abstract :
[en] 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.
Disciplines :
Neurology
Author, co-author :
Bonin, Estelle  ;  Université de Liège - ULiège > GIGA
Delsemme, Zoé;  Coma Science Group, GIGA-Consciousness, University of Liège, 4000 Liege, Belgium ; Centre du Cerveau2, University Hospital of Liège, 4000 Liege, Belgium
Blandin, Véronique;  Association des Locked-in Syndrome (ALIS), 92100 Boulogne-Billancourt, France
Alnagger, Naji ;  Université de Liège - ULiège > Département des sciences cliniques
Thibaut, Aurore  ;  Université de Liège - ULiège > Département des sciences cliniques
FAYMONVILLE, Marie-Elisabeth ;  Centre Hospitalier Universitaire de Liège - CHU > > Centre d'oncologie
LAUREYS, Steven  ;  Centre Hospitalier Universitaire de Liège - CHU > > Centre du Cerveau² ; Joint International Research Unit on Consciousness, CERVO Brain Research Centre, CIUSS, University Laval, Quebec City, QC G1V 0A6, Canada
VANHAUDENHUYSE, Audrey   ;  Centre Hospitalier Universitaire de Liège - CHU > > Service d'algologie - soins palliatifs
Gosseries, Olivia   ;  Université de Liège - ULiège > Département des sciences cliniques
 These authors have contributed equally to this work.
Language :
English
Title :
French Survey on Pain Perception and Management in Patients with Locked-In Syndrome.
Publication date :
21 March 2022
Journal title :
Diagnostics
eISSN :
2075-4418
Publisher :
MDPI AG, Switzerland
Volume :
12
Issue :
3
Pages :
769
Peer reviewed :
Peer Reviewed verified by ORBi
European Projects :
H2020 - 785907 - HBP SGA2 - Human Brain Project Specific Grant Agreement 2
Funders :
F.R.S.-FNRS - Fund for Scientific Research [BE]
EU - European Union [BE]
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since 30 March 2022

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