The Disorders of Consciousness Special Interest Group (DoC-SIG) is very involved group within the International Brain Injury Association that is continually working on research and collaborations. The following is a list of current and on-going projects that the members of the DoC-SIG are working on:
a) Survey on Treatments across Countries
In this project, we were interested in assessing, using online surveys, the extent to which treatment facilities are available and what types of treatment approaches are actually being used in adults and children with DoC in the countries represented in the IBIA-DOC-SIG. Due to the complexity of the topic, the task was divided into two parts:
- Part 1: Structures of care, availability, duration and payment of treatment;
- Part 2: Therapies being implemented
b) Guidelines for the Treatment of Epilepsy & Review of the Literature:
Review of Literature
The first aim of this review is to assess the occurrence of epilepsy and epileptic abnormalities (EA) in patients with prolonged DOC and to determine the influence of such abnormalities on recovery. The second aim was to review the influence of antiepileptic drugs (AED) and therapeutic interventions on seizure prevalence and consciousness recovery.
Project Led by: Dr. Lejeune
Survey on the Management of Epilepsy in DOC Patients
Through a survey, we asked healthcare professionals who work with DOC patients about epilepsy disorders (ED). The goal of this project is to collect information about ED prophylaxis, diagnosis and treatment. In addition, we wanted to determine the impact of amantadine in the management of ED/EA and the impact of ED/EA on amantadine use. Once the info is gathered, we aim to do recommendations to the DOC community.
Project Led by: Dr. Briand
c) Multi-Center tDCS Study
The goal of this multi-center randomized controlled double-blind clinical trial is 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.
Project Led by: Dr. Thibault
d) Pain Management
The survey aims to assess the current state of knowledge of caregivers and families and what is currently being done in the clinical management of pain in DOCs. The survey will be sent to families and clinical teams to collect their opinion and knowledge on pain assessment and management in DOC patients. The purpose of this project is to better understand the needs and expectations of clinicians and families regarding this topic and by this way improve the assessment and clinical management of pain in this population.
Project Led by: Mrs. Bonin
e) End of life decisions
The questionnaire “END-OF-LIFE DECISION-MAKING FOR PATIENTS WITH DISORDERS OF CONSCIOUSNESS” aims to improve the understanding of decisions on the (dis)continuation of life-sustaining treatment for patients with DOC.
Project Led by: Mrs. Cecconi
f) Music Therapy
The aim of this project is to evaluate the effects of preferred music and binaural beats on DOC patient’s responsiveness and arousal. A pseudo-randomized controlled trial will be implemented. Behavioral evaluations and EEG will be collected to evaluate the effects of the respective interventions.
Project Led by: Dr. Schnakers
G) Treatment Efficacy of Personalised Multisensory Stimulation (MSS) in Improving Functional and Structural Connectivity in DoC : A NODDI/ resting state-fMRI Multi-Center Study
The primary goal of the study is to measure the efficacy of standardized administration of personalized multisensory stimulation (MSS) amongst adult patients with DoC over an 8-week period. The proposed imaging modality of choice to measure MSS-induced structural and functional connectivity changes are through rs-fMRI and NODDI, along with relevant behavioral outcome measures. We understand that some interested Centers might have limitations in terms of resources/ facilities for the advanced imaging investigations, and therefore an option to participate in the behavioral data component of the study (via MSS administration and behavioral outcome measures) is possible. Additionally, an online training on standardized MSS administration will be made available to interested parties.
Project Led by: Dr. Veeramuthu