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

[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 :

Issue :

Pages :

769

Peer reviewed :

Peer Reviewed verified by ORBi

Additional URL :

https://www.mdpi.com/2075-4418/12/3/769/pdf

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]

Available on ORBi :

since 30 March 2022

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