{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,1,6]],"date-time":"2026-01-06T05:19:35Z","timestamp":1767676775474,"version":"build-2065373602"},"reference-count":46,"publisher":"MDPI AG","issue":"3","license":[{"start":{"date-parts":[[2022,3,21]],"date-time":"2022-03-21T00:00:00Z","timestamp":1647820800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100002661","name":"Fund for Scientific Research","doi-asserted-by":"publisher","award":["T.0134.21"],"award-info":[{"award-number":["T.0134.21"]}],"id":[{"id":"10.13039\/501100002661","id-type":"DOI","asserted-by":"publisher"}]},{"name":"the European Union\u2019s Horizon 2020 Framework Programme for Research and Innovation","award":["785907","945539"],"award-info":[{"award-number":["785907","945539"]}]},{"name":"The Luminous Project","award":["EU-H2020-fetopenga686764"],"award-info":[{"award-number":["EU-H2020-fetopenga686764"]}]},{"name":"the Center-TBI project","award":["FP7-HEALTH- 602150"],"award-info":[{"award-number":["FP7-HEALTH- 602150"]}]},{"name":"the DOCMA project","award":["EU-H2020-MSCA\u2013RISE\u2013778234"],"award-info":[{"award-number":["EU-H2020-MSCA\u2013RISE\u2013778234"]}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Diagnostics"],"abstract":"<jats:p>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 \u2018moderate\u2019. 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.<\/jats:p>","DOI":"10.3390\/diagnostics12030769","type":"journal-article","created":{"date-parts":[[2022,3,21]],"date-time":"2022-03-21T13:24:59Z","timestamp":1647869099000},"page":"769","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":4,"title":["French Survey on Pain Perception and Management in Patients with Locked-In Syndrome"],"prefix":"10.3390","volume":"12","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-5120-2767","authenticated-orcid":false,"given":"Estelle A. C.","family":"Bonin","sequence":"first","affiliation":[{"name":"Coma Science Group, GIGA-Consciousness, University of Li\u00e8ge, 4000 Liege, Belgium"},{"name":"Centre du Cerveau<sup>2<\/sup>, University Hospital of Li\u00e8ge, 4000 Liege, Belgium"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Zo\u00e9","family":"Delsemme","sequence":"additional","affiliation":[{"name":"Coma Science Group, GIGA-Consciousness, University of Li\u00e8ge, 4000 Liege, Belgium"},{"name":"Centre du Cerveau<sup>2<\/sup>, University Hospital of Li\u00e8ge, 4000 Liege, Belgium"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"V\u00e9ronique","family":"Blandin","sequence":"additional","affiliation":[{"name":"Association des Locked-in Syndrome (ALIS), 92100 Boulogne-Billancourt, France"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Naji L.","family":"Alnagger","sequence":"additional","affiliation":[{"name":"Coma Science Group, GIGA-Consciousness, University of Li\u00e8ge, 4000 Liege, Belgium"},{"name":"Centre du Cerveau<sup>2<\/sup>, University Hospital of Li\u00e8ge, 4000 Liege, Belgium"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5991-1747","authenticated-orcid":false,"given":"Aurore","family":"Thibaut","sequence":"additional","affiliation":[{"name":"Coma Science Group, GIGA-Consciousness, University of Li\u00e8ge, 4000 Liege, Belgium"},{"name":"Centre du Cerveau<sup>2<\/sup>, University Hospital of Li\u00e8ge, 4000 Liege, Belgium"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Marie-Elisabeth","family":"Faymonville","sequence":"additional","affiliation":[{"name":"Centre Interdisciplinaire d\u2019Algologie, University Hospital of Li\u00e8ge, 4000 Liege, Belgium"},{"name":"Sensation and Perception Research Group, GIGA-Consciousness, University of Li\u00e8ge, 4000 Liege, Belgium"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Steven","family":"Laureys","sequence":"additional","affiliation":[{"name":"Coma Science Group, GIGA-Consciousness, University of Li\u00e8ge, 4000 Liege, Belgium"},{"name":"Centre du Cerveau<sup>2<\/sup>, University Hospital of Li\u00e8ge, 4000 Liege, Belgium"},{"name":"Joint International Research Unit on Consciousness, CERVO Brain Research Centre, CIUSS, University Laval, Quebec City, QC G1V 0A6, Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4288-9237","authenticated-orcid":false,"given":"Audrey","family":"Vanhaudenhuyse","sequence":"additional","affiliation":[{"name":"Centre Interdisciplinaire d\u2019Algologie, University Hospital of Li\u00e8ge, 4000 Liege, Belgium"},{"name":"Sensation and Perception Research Group, GIGA-Consciousness, University of Li\u00e8ge, 4000 Liege, Belgium"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9011-7496","authenticated-orcid":false,"given":"Olivia","family":"Gosseries","sequence":"additional","affiliation":[{"name":"Coma Science Group, GIGA-Consciousness, University of Li\u00e8ge, 4000 Liege, Belgium"},{"name":"Centre du Cerveau<sup>2<\/sup>, University Hospital of Li\u00e8ge, 4000 Liege, Belgium"},{"name":"Sensation and Perception Research Group, GIGA-Consciousness, University of Li\u00e8ge, 4000 Liege, Belgium"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"1968","published-online":{"date-parts":[[2022,3,21]]},"reference":[{"key":"ref_1","first-page":"392","article-title":"Review on Locked-in Syndrome","volume":"7","author":"Johncy","year":"2020","journal-title":"IJRR"},{"key":"ref_2","doi-asserted-by":"crossref","first-page":"495","DOI":"10.1016\/S0079-6123(05)50034-7","article-title":"The Locked-in Syndrome: What Is It like to Be Conscious but Paralyzed and Voiceless?","volume":"150","author":"Laureys","year":"2005","journal-title":"Prog. 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