[en] Diagnostic, prognostic, and therapeutic procedures for patients with prolonged disorders of consciousness (pDoCs) vary significantly across countries and clinical settings, likely due to organizational factors (e.g., research vs. non-academic hospitals), expertise and availability of resources (e.g., financial and human). Two international guidelines, one from the European Academy of Neurology (EAN) and one from the American Academy of Neurology (AAN) in collaboration with the American Congress of Rehabilitation Medicine (ACRM) and the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR), were developed to facilitate consistent practice among professionals working with this challenging patient population. While the recommendations of both guidelines agree in principle, it remains an open issue how to implement them into clinical practice in the care pathway for patients with pDoCs. We conducted an online survey to explore health professional clinical practices related to the management of patients with pDoCs, and compare said practices with selected recommendations from both the guidelines. The survey revealed that while some recommendations are being followed, others are not and/or may require more honing/specificity to enhance their clinical utility. Particular attention should be given to the implementation of a multimodal assessment of residual consciousness, to the detection and treatment of pain, and to the impact of restrictions imposed by COVID-19 pandemics on the involvement of patients' families/representatives.
Disciplines :
Neurosciences & behavior
Author, co-author :
Farisco, Michele ; Centre for Research Ethics and Bioethics, Uppsala University, Uppsala, Sweden. michele.farisco@crb.uu.se ; Biogem, Biology and Molecular Genetics Research Institute, Ariano Irpino, AV, Italy. michele.farisco@crb.uu.se
Formisano, Rita; IRCCS Santa Lucia Foundation, Rome, Italy
Gosseries, Olivia ; Université de Liège - ULiège > GIGA > GIGA Consciousness - Coma Science Group
Kato, Yoko; Department of Neurosurgery, Fujita Health University Bantane Hospital, Nagoya, Aichi, Japan
Koboyashi, Shigeki; Division of Neurosurgery, Rehabilitation Center for Traumatic Apallics Chiba, National Agency for Automotive Safety and Victims' Aid, 3-30-1 Isobe, Mihamaku, Chibashi, Chiba, 261-0012, Japan
Laureys, Steven ; Centre Hospitalier Universitaire de Liège - CHU > > Centre du Cerveau² ; CERVO Brain Research Center, University of Laval, Québec, QC, Canada
Lejeune, Nicolas ; Université de Liège - ULiège > GIGA > GIGA Consciousness - Coma Science Group ; CHN William Lennox, Ottignies-Louvain-La Neuve, Belgium ; Institute of NeuroScienceUCLouvain, Ottignies-Louvain-La Neuve, Belgium
Martial, Charlotte ; Université de Liège - ULiège > GIGA > GIGA Consciousness - Coma Science Group
Matar, Amal; Centre for Research Ethics and Bioethics, Uppsala University, Uppsala, Sweden
Morrisey, Ann-Marie; School of Allied Health, Faculty of Education and Health Sciences, Ageing Research Centre, Health Research Institute, University of Limerick, Limerick, Ireland
Schnakers, Caroline ; Université de Liège - ULiège > Unités de recherche interfacultaires > GIGA-CRC In vivo Imaging (Centre de Recherche du Cyclotron) ; Research Institute, Casa Colina Hospital and Centers for Healthcare, Pomona, CA, USA
Yakufujiang, Maidinamu; Division of Neurosurgery, Rehabilitation Center for Traumatic Apallics Chiba, National Agency for Automotive Safety and Victims' Aid, 3-30-1 Isobe, Mihamaku, Chibashi, Chiba, 261-0012, Japan
Yamaki, Tomohiro; Division of Neurosurgery, Rehabilitation Center for Traumatic Apallics Chiba, National Agency for Automotive Safety and Victims' Aid, 3-30-1 Isobe, Mihamaku, Chibashi, Chiba, 261-0012, Japan
Veeramuthu, Vigneswaran; Thomson Hospital Kota Damansara, Petaling Jaya, Selangor, Malaysia
Zandalasini, Matteo; Unità Spinale, Neuroriabilitazione E Medicina Riabilitativa Intensiva, Dipartimento Di Medicina Riabilitativa, Azienda USL Di Piacenza, Piacenza, Italy
Zasler, Nathan; Concussion Care Centre of Virginia, LTD, Henrico, VA, 23233, USA ; Department of Physical Medicine and Rehabilitation, Virginia Commonwealth University, Richmond, VA, 23298, USA
Magliacano, Alfonso; IRCCS Fondazione Don Carlo Gnocchi ONLUS, Florence and Sant'Angelo dei Lombardi, AV, Italy
Estraneo, Anna; IRCCS Fondazione Don Carlo Gnocchi ONLUS, Florence and Sant'Angelo dei Lombardi, AV, Italy
H2020 - 945539 - HBP SGA3 - Human Brain Project Specific Grant Agreement 3
Funders :
EU - European Union [BE] Ministero della Salute [IT] F.R.S.-FNRS - Fund for Scientific Research [BE] Télévie [BE] Bial Foundation [PT] MSF - Mind Science Foundation [US-TX] KBFUS - King Baudouin Foundation United States [US-NY] Fonds Léon Fredericq [BE] Uppsala Universitet [SE]
Funding text :
The study was supported by the European Union’s Horizon 2020 Framework Programme for Research and Innovation under the Specific Grant Agreement No. 945539 (Human Brain Project SGA3) (MF). The study was supported by the University and University Hospital of Liege, the Belgian National Funds for Scientific Research (FRS-FNRS), the FNRS PDR project (T.0134.21), the Televie Foundation, the European Union’s Horizon 2020 Framework Programme for Research and Innovation under the Specific Grant Agreement No. 945539 (Human Brain Project SGA3), the BIAL Foundation, the Mind Science Foundation and the European Commission, the fund Generet, the King Baudouin Foundation, the Fondation Leon Fredericq, and the DOCMA project [EU-H2020-MSCA–RISE–778234] (OG, SL, NL, CM). The study was supported by the Italian Ministry of Health with the Ricerca Corrente RC2021–RC2022 programs (AM). The study was supported by the European Union’s
Horizon 2020 Framework Programme for Research and Innovation
under the Specific Grant Agreement No. 945539 (Human Brain Project
SGA3) (MF). The study was supported by the University and University
Hospital of Liege, the Belgian National Funds for Scientific
Research (FRS-FNRS), the FNRS PDR project (T.0134.21), the Televie
Foundation, the European Union’s Horizon 2020 Framework Programme
for Research and Innovation under the Specific Grant Agreement
No. 945539 (Human Brain Project SGA3), the BIAL Foundation,
the Mind Science Foundation and the European Commission, the fund
Generet, the King Baudouin Foundation, the Fondation Leon Fredericq,
and the DOCMA project [EU-H2020-MSCA–RISE–778234] (OG,
SL, NL, CM). The study was supported by the Italian Ministry of
Health with the Ricerca Corrente RC2021–RC2022 programs (AM).
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