DoC SIG Webinar

Past DoC SIG Webinar

Title: EENACOMA: A Model of Care for Disorders of Consciousness

About the Speaker

Dr. Willemijn van Erp, MD, PhD has dedicated her professional attention as a scientist and physician to patients with the most severe sequelae of acquired brain injury since 2011, when she wholeheartedly traded the acute neurologic practice for long-term care medicine. She registered as an elderly care physician (‘nursing home physician’, a medical speciality unique to the Netherlands) in 2018 and obtained her PhD at the universities of Nijmegen (the Netherlands) and Liège (Belgium) in 2020. Currently, Van Erp combines a post-doc position at the RadboudUMC with clinical positions at Accolade Zorg and Libra Rehabilitation & Audiology in the Netherlands, all within a nationwide network of expertise called EENnacoma.

Educational Overview

Diagnostic and prognostic uncertainty, fragmented care after the acute phase, over- and undertreatment and ethical dilemma’s in deciding what is appropriate treatment: challenges in daily practice for patients with disorders of consciousness are universal. The Netherlands, however, until very recently did a particularly bad job in providing the necessary care for PDOC. Only patients younger than 25 received specialized rehabilitation; outside of those mere 14 weeks, they fell into the cracks of the care system.

2019 however saw a drastic reform. Virtually all PDOC patients are now eligible for a specialized care trajectory that can cover up to 24 months post-injury. How did this change come about? In this session, Van Erp will highlight the key ingredients to change in PDOC practice and its challenges, and invite the audience to a discussion on how to make use of the Dutch experience in other countries.

Title: Recent Findings on Diagnosis, Prognosis and Treatment of Persons with Disorders of Consciousness: An Update from the Disorders of Consciousness Special Interest Group and the European DOCMA Project

More details about session:

Part I. Advances in diagnosis

Nociception Coma Scale with personalized painful stimulation versus standard stimulus in noncommunicative patients with disorders of consciousness

Speaker: Dr. Rita Formisano - IRCCS Fondazione Santa Lucia, Rome, Italy

Summary: Persons with disorders of consciousness (DoC) may perceive pain without being able to communicate their discomfort. Nociception Coma Scale (NCS) and its revised form (NCS-R) have been proposed to assess nociception in coma survivors with DoC. Objective: Aim of the present study was to compare, in non-communicative patients with DoC, NCS-R scores obtained with the standard pressure on fingernail bed (standard stimulus, SS) versus other personalized painful stimuli (PS), to verify possible correlations between NCS-R and Coma Recovery Scale-Revised (CRS-R). Twenty-one patients with DoC were included in the study. Responsiveness and pain perception were assessed by CRS-R and NCS-R with standard stimulus (NCS-R-SS) and personalized stimulation (NCS-R-PS). Statistical analysis was performed with the nonparametric Wilcoxon test for comparison of both total NCS-R-SS and NCS-R-PS scores. NCS-R at admission showed that 9 of 21 patients (42.8%) had higher scores in response to personalized stimulus compared to standard stimulus. Significant correlation with CRS-R were found for both NCS-R-SS (R = 0.701, p = .008) and NCS-R-PS (R = 0.564, p = .045). The preliminary results obtained in the present study suggest that NCS-R-PS may disclose pain perception in a larger number of non-communicative patients with DoC, compared to NCS-R-SS.

About the Speaker: Director of the Post-Coma Unit and of the neuropsychological rehabilitation service of patients with severe acquired brain injury (sABI) of the neurorehabilitation hospital and research institute Santa Lucia Foundation, Rome, Italy. Author of 189 papers published in indexed journals (H-INDEX: 33; source: SCOPUS), and served as reviewer for many of these. Engaged in the evaluation, neurorehabilitation and translational clinical research of sABI patients with disorder of consciousness (DoC) for 35 years. President of the Italian Society of High Specialty Rehabilitation (SIRAS), involved in several national and international protocols, multicentric studies and National Consensus Conferences.

Bedside strategies for improving diagnostic accuracy in prolonged Disorders of Consciousness

Speaker: Dr. Alfonso Magliacano, Don Gnocchi Foundation - Scientific and Rehabilitation Institute

Summary: To date, differential diagnosis of pDoC relies on clinical observation of the patients’ behaviours in response to multisensory stimulation, that can be however affected by several bias leading to a rate of misdiagnosis near to 30-40%. This talk will present the results of 2 studies, realized within the framework of the DoCMA project:1. a systematic review aimed at assessing the actual effectiveness of salient stimuli in boosting patients’ conscious behaviors, with respect to neutral stimuli; 2. an observational study investigating whether an overt spontaneous and physiological behaviour, i.e. the eye blink rate, could serve as a marker of patients’ level of responsiveness.

About the speaker: He obtained his doctorate at the University of Campania “Luigi Vanvitelli” (Italy) with a thesis on novel diagnostic procedures in patients with prolonged Disorders of Consciousness. He currently works as a researcher at the Don Gnocchi Foundation, Scientific and Rehabilitation Institute for patients with severe brain injury, in Florence and in Sant’Angelo dei Lombardi (Italy). His work mainly focuses on clinical and cognitive indices supporting diagnosis and prognosis of patients with severe acquired brain injury and, in particular, with prolonged Disorders of Consciousness. He is a Member of the EAN Special Panel on Coma and Chronic Disorders of Consciousness, and he is author of several papers published on international peer-reviewed scientific journals.

Part II. Advances in prognosis

Towards an international consensus for bedside prognostication of prolonged DoC

Speaker: Dr. Anna Estraneo - Don Gnocchi Foundation, Scientific and Rehabilitation Institute

Summary: Reliable prognostic evaluation of people with severe brain injury and prolonged disorders of consciousness (pDoC) is still difficult. Recently, the American Academy of Neurology provided recommendations for the management of people with pDoC. However, their application in practice remains challenging, and prognostic procedures for people with pDoC vary from country to country and may result in differences in patient management and outcome. In this context, even today physicians and patients' families face many difficulties in making appropriate decisions about the long-term care of such complex patients. As part of a fruitful collaboration between IBIA DOC-SIG and the European DoCMA project, we have coordinated a multicenter, longitudinal study of a cohort of patients with pDoC, with the aim of identifying clinical and neurophysiological predictors for clinical outcome and mortality at 24 months in patients with pDoC that are easy to collect at the patient's bedside and in all clinical settings. The talk will provide current evidence on the clinical evolution of patients with pDoC and present the results of the project as a starting point for an international consensus on prognostic procedures in patients with DoC.

About the Speaker: She was the coordinator of the ICS Maugeri Research Laboratory for the study of Disorders of Consciousness (DoC) and of the Neurorehabilitation Unit for severely brain–injured patients with prolonged DoC, (Italy) for 25 years. She currently works in Neurology Unit at General Hospital in Nola (Italy) and is scientific consultant of Neurorehabilitation Unit for patients with prolonged DoC at Don Gnocchi Foundation Scientific and Rehabilitation Institute for patients with severe brain injury. She was adjunct Professor at Dept. of Neurophysiology, University Federico II of Naples and she got Italian Qualification as Associate Professor in Neurology. Scientific Society membership: Co-Chair of the EAN Scientific Panel on Coma and chronic DoC; Leader of the diagnosis/prognosis subgroup of the IBIA DoC-SIG with Drs. C. Schnakers and N. Zasler serving as chairs; Member of Task Force on the EAN Guidelines on Diagnosis of Coma and Chronic DoC and of and Italian inter-societies recommendations for management of anoxic DoC; Board member of the Italian Neurological Rehabilitation and of the Italian Neurophysiology Societies and chair of the SIG on DoC.

Part III. Advances in treatment

Should tDCS be implemented in rehabilitation to promote recovery in DoC patients: lessons from a mutlicenter translational trial

Speaker: Dr. Aurore Thibaut - Coma Science Group, GIGA-Consciousness & Centre du Cerveau, University & University Hospital of Liege, Belgium

Summary: There is a growing number of clinical trials aiming at improving post-comatose patients’ level of consciousness including a number of studies testing the effects of non-invasive brain stimulation techniques (e.g., transcranial direct current stimulation – tDCS). However, there is still a lack of a large multicenter RCT testing its efficacy in a convenient sample. Therefore, as part of the IBIA DOC-SIG and the DoCMA project we conducted this first multicenter RCT aiming to test the effects of the application of tDCS (or sham) during four weeks on the short-term recovery (right after the 4 weeks of stimulation) and the long-term outcome (three-month follow-up) of patients in prolonged DoC while being in rehabilitation. This talk will provide an overview of the current available treatment for DoC patients focusing on non-invasive brain stimulation and will present the results of this first multicenter clinical trial on tDCS in DoC.

About the Speaker: As a physical therapist by training, Dr Thibaut is interested in developing novel neurorehabilitation strategies for patients with both mild and severe brain injuries. Aurore research mainly focus on non-invasive brain stimulation in post-coma patients with the aim to improve brain plasticity and facilitate their recovery. She published more than 100 papers and is leading several multicenter clinical trials. She is also working with neuroimaging and electrophysiology to objectify brain plasticity linked to these therapeutic approaches. She recently started to study concussion and the importance of sleep and motor learning impairments in this condition. After completing her PhD she spent two years as a postdoctoral research fellow at the Spaulding Rehabilitation Center, Harvard Medical School, under the supervision of Prof. Fregni. She also closely collaborated with Prof. Giacino, Director of Rehabilitation Neuropsychology, Department of Physical Medicine, Harvard Medical School. She currently has a FNRS post-doctoral position since 2017 at the Coma Science Group where she leads the Neurorehabilitation team and was recently promoted co-director of the Coma Science Group with Dr. Olivia Gosseries. Beside her research activities at the Coma Science Group, she is an Associate professor at the University of Liège and an invited lecturer at the Université Libre de Bruxelle. Aurore also leads the treatment subgroup of the IBIA DOC-SIG with Drs. Caroline Schnakers and Nathan Zasler serving as chairs.

Title: Minimum Competency Recommendations for Programs That Provide Rehabilitation Services for Persons With Disorders of Consciousness: A Position Statement of the American Congress of Rehabilitation Medicine and the National Institute on Disability, Independent Living and Rehabilitation Research Traumatic Brain Injury Model Systems

Speakers: Joseph Giacino and Douglas Katz

Date: September 16, 2020 at 3pm eastern/2pm central

Webinar Summary

Persons who have disorders of consciousness (DoC) require care from multidisciplinary teams with specialized training and expertise in management of the complex needs of this clinical population. The recent promulgation of practice guidelines for patients with prolonged DoC by the American Academy of Neurology, American Congress of Rehabilitation Medicine (ACRM), and National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) represents a major advance in the development of care standards in this area of brain injury rehabilitation. Implementation of these practice guidelines requires explication of the minimum competencies of clinical programs providing services to persons who have DoC. The Brain Injury Interdisciplinary Special Interest Group of the ACRM, in collaboration with the Disorders of Consciousness Special Interest Group of the NIDILRR-Traumatic Brain Injury Model Systems convened a multidisciplinary panel of experts to address this need through the present position statement. Content area-specific workgroups reviewed relevant peer-reviewed literature and drafted recommendations which were then evaluated by the expert panel using a modified Delphi voting process. The process yielded 21 recommendations on the structure and process of essential services required for effective DoC-focused rehabilitation, organized into 4 categories: diagnostic and prognostic assessment (4 recommendations), treatment (11 recommendations), transitioning care/long-term care needs (5 recommendations), and management of ethical issues (1 recommendation). With few exceptions, these recommendations focus on infrastructure requirements and operating procedures for the provision of DoC-focused neurorehabilitation services across subacute and post-acute settings.

Speaker Bios

Joseph T. Giacino, PhD
Joseph T. Giacino, PhD is the Director of Rehabilitation Neuropsychology at Spaulding Rehabilitation Hospital in Boston. He is Consulting Neuropsychologist in the Department of Psychiatry at Massachusetts General Hospital, and he is a Professor of Physical Medicine and Rehabilitation at Harvard Medical School. He led the expert panels that established the diagnostic criteria for the minimally conscious state and developed the 2018 Practice Guideline on Disorders of Consciousness.

Douglas I. Katz, MD
Douglas I. Katz, MD is Professor of Neurology at Boston University School of Medicine, a member of the neurology staff at Boston Medical Center and Medical Director of the Brain Injury Program at Encompass Health Braintree Rehabilitation Hospital. Dr. Katz is a recognized leader in the field of traumatic brain injury rehabilitation with over 30 years of experience in TBI clinical care, research, education and program development and served as President of the American Congress of Rehabilitation Medicine (ACRM) from 2015-2017.

DoC-SIG Webinar Registration

This webinar will take place on September 16, 2020 at 3pm eastern/2pm central. To register, please click on "Webinar - DoC SIG" button below.