Periodic Reporting for period 2 - DoCMA (Disorders of Consciousness (DoC): enhancing the transfer of knowledge and professional skills on evidence-based interventions and validated technology for a better management of patients)
Berichtszeitraum: 2020-01-01 bis 2023-01-31
Disorders of consciousness (DoC) including coma, unresponsive wakefulness syndrome (UWS) and the minimally conscious state (MCS) are an important challenge for scientific inquiry. Prestigious international scientific institutions such as the International Brain Injury Association (Zitnay et al, 2006) or the Brain Trauma Foundation, consider that DoC represent, on one side, a difficult challenge in terms of clinical diagnosis and treatment, but also a promising opportunity for generating fundamental scientific advances about the nature of consciousness, which can help to increase our knowledge about the singularity of the human brain (Laureys et al, 2012). The current State of the Art (Giacino et al, 2014; Wade, 2014) on this topic, clearly determines three main challenges for future advances on clinical care and research in this population:
-Diagnosis: Lack of current standards to guide the timing or nature of clinical assessment in this population.
-Prognosis: Scarce literature and/or data focused on prognostic clinical factors and biomarkers for outcome prediction
-Treatment: Insufficient data to recommend for or against the use of any particular treatment intervention including the need of further research regarding new promising therapeutic approaches (e.g: non-invasive brain stimulation).
Thus, the overall goal of DOCMA is to create a structured international network of institutions involved in the care of individuals with DoC, where specific objectives are:
-Consolidating of a joint international scientific and innovation programme for developing a research project focused on diagnosis, assessment, and management of Doc patients.
-Establishing a standardized methodology, and data sharing resources to enable data access and research collaborations concerning DoC.
-Contribution to transfer knowledge and quality of life of the individuals, by generating new services, technologies and/or products to respond to the society needs concerning DoC.
Finally, DoC have profound social, ethical, and economic consequences. All these clinical entities are associated with an overwhelmed functional dependency requiring prolonged assistance resources. The knowledge acquired and the techniques developed can help to improve the quality of life for persons with Doc and their relatives or informal caregivers by including more efficient diagnosis and assessment processes, better care-pathways and new cost-effective treatments.
-Diagnosis: Lack of current standards to guide the timing or nature of clinical assessment in this population.
-Prognosis: Scarce literature and/or data focused on prognostic clinical factors and biomarkers for outcome prediction
-Treatment: Insufficient data to recommend for or against the use of any particular treatment intervention including the need of further research regarding new promising therapeutic approaches (e.g: non-invasive brain stimulation).
Thus, the overall goal of DOCMA is to create a structured international network of institutions involved in the care of individuals with DoC, where specific objectives are:
-Consolidating of a joint international scientific and innovation programme for developing a research project focused on diagnosis, assessment, and management of Doc patients.
-Establishing a standardized methodology, and data sharing resources to enable data access and research collaborations concerning DoC.
-Contribution to transfer knowledge and quality of life of the individuals, by generating new services, technologies and/or products to respond to the society needs concerning DoC.
Finally, DoC have profound social, ethical, and economic consequences. All these clinical entities are associated with an overwhelmed functional dependency requiring prolonged assistance resources. The knowledge acquired and the techniques developed can help to improve the quality of life for persons with Doc and their relatives or informal caregivers by including more efficient diagnosis and assessment processes, better care-pathways and new cost-effective treatments.
The progress of DoCMA during its firsts 2 years focused on compiling knowledge on DoC care management and describing clinical, and neurophysiological data associated with specific recovery trajectories. During this period, all the members of the Consortium have participated in data collection to elaborate one of the largest multicentric longitudinal samples of individuals with DoC already published. The last two years were dedicated to data analysis and dissemination including 3 relevant achievements:
-Achivement 1 (Diagnosis): validation of a new phone outcome questionnaire (POQ) which allows clinicians to probe the evolution of a patient’s state of consciousness based on caregivers’ feedback.
-Achivement 2 (Treatment): demonstration of the safety and effectiveness of transcranial direct current stimulation (tDCS) in promoting recovery of signs of consciousness in patients diagnosed in prolonged DoC while being in post-acute rehabilitation .
-Achivement 3 (Prognosis): demonstration of a feasible multimodal assessment of DoC patients in the post- acute phase can help clinicians to identify patients with higher likelihood of clinical improvement and/or survival, within 24 months after brain injury.
In addition, this project has pay particular attention to the education of young-early researchers in the field of DoC through the development of interdisciplinary training activities and research exchanges and interactions among the partners including some of the results exposed below:
- 84 researchers enrolled in secondments with a total duration of 164 months.
- 7 manuscripts published and 2 more in preparation about diagnosis and prognosis of DoC patients.
- 1 Cochrane protocol (Krewer, C. & A. Thibaut; 2020)
- 88 publications including DOCMA project in acknowledgments
- 63 on-site conferences.
- 28 seminars focused on diagnostic, prognostic and treatment procedures in patients with DoC.
- 52 workshops, focused on neurophysiological evaluations for a better diagnosis, on clinical management of DoC patients, and on novel rehabilitation approaches
- 1 International Symposium and 2online webinars in collaboration with the International Brain Injnury Association (IBIA).
- Partnership with the European initiative Human Brain project
-Achivement 1 (Diagnosis): validation of a new phone outcome questionnaire (POQ) which allows clinicians to probe the evolution of a patient’s state of consciousness based on caregivers’ feedback.
-Achivement 2 (Treatment): demonstration of the safety and effectiveness of transcranial direct current stimulation (tDCS) in promoting recovery of signs of consciousness in patients diagnosed in prolonged DoC while being in post-acute rehabilitation .
-Achivement 3 (Prognosis): demonstration of a feasible multimodal assessment of DoC patients in the post- acute phase can help clinicians to identify patients with higher likelihood of clinical improvement and/or survival, within 24 months after brain injury.
In addition, this project has pay particular attention to the education of young-early researchers in the field of DoC through the development of interdisciplinary training activities and research exchanges and interactions among the partners including some of the results exposed below:
- 84 researchers enrolled in secondments with a total duration of 164 months.
- 7 manuscripts published and 2 more in preparation about diagnosis and prognosis of DoC patients.
- 1 Cochrane protocol (Krewer, C. & A. Thibaut; 2020)
- 88 publications including DOCMA project in acknowledgments
- 63 on-site conferences.
- 28 seminars focused on diagnostic, prognostic and treatment procedures in patients with DoC.
- 52 workshops, focused on neurophysiological evaluations for a better diagnosis, on clinical management of DoC patients, and on novel rehabilitation approaches
- 1 International Symposium and 2online webinars in collaboration with the International Brain Injnury Association (IBIA).
- Partnership with the European initiative Human Brain project
DOCMA project has allowed to increase the scientific competence and clinical practice in the management of DoC patients at an international level. We have investigated patients’ assessments, prognosis and therapeutic interventions by means of large multicenter studies which have contributed to the state of the art by adding new assessment tools, practical information for outcome-prognosis including data from multimodal diagnosis techniques- and innovative therapeutical protocols. Also, DOCMA has contributed to overcome existing limitations by defining a common standardised procedure and timing for short and long-term patient assessment. A data sharing repository has been also designed and implemented to bring together the information collected by the respective project partners (and if applicable additional collaborating entities working on the field). All the knowledge compiled about DoC care management, treatment and recovery has contributed to train ESRs on specific evidence-based clinical and therapeutic alternatives. Also, ER have been responsible of the transfer of knowledge beyond the consortium through different international scientific and academic activities. Data collected here can provide and excellent reference for future researchers and are available to be compared with, or included in futures studies including large multicenter samples for machine-learning analysis. Finally, multicenter controlled trial using tDCS can help to shed light on the effectiveness of this and others non-invasive brain stimulation techniques and further characterize the clinical profile of those patients with probable or possible good response to this treatment .
Providing better clinical care and advanced and individualized therapeutic options can have a significant impact on the lives of family caregivers, besides promoting significant changes on current policies and pathways of care, elaborating future clinical guidelines focused on this population. Most of the economic cost derived from caring for DOC patients relays on lack of enough expertise leading to misdiagnosis, inadequate treatment, medical complications and insufficient research. We expect that our data can help to more accurate DOC diagnosis and treatment and will decrease costs associated with long-term care of DOC patients.
Providing better clinical care and advanced and individualized therapeutic options can have a significant impact on the lives of family caregivers, besides promoting significant changes on current policies and pathways of care, elaborating future clinical guidelines focused on this population. Most of the economic cost derived from caring for DOC patients relays on lack of enough expertise leading to misdiagnosis, inadequate treatment, medical complications and insufficient research. We expect that our data can help to more accurate DOC diagnosis and treatment and will decrease costs associated with long-term care of DOC patients.