Proceedings of the Second Curing Coma Campaign NIH Symposium: Challenging the Future of Research for Coma and Disorders of Consciousness.
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SUBMITTER: Mainali S
PROVIDER: S-EPMC9283342 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:Coma and disorders of consciousness (DoC) are highly prevalent and constitute a burden for patients, families, and society worldwide. As part of the Curing Coma Campaign, the Neurocritical Care Society partnered with the National Institutes of Health to organize a symposium bringing together experts from all over the world to develop research targets for DoC. The conference was structured along six domains: (1) defining endotype/phenotypes, (2) biomarkers, (3) proof-of-concept clinical trials, (4) neuroprognostication, (5) long-term recovery, and (6) large datasets. This proceedings paper presents actionable research targets based on the presentations and discussions that occurred at the conference. We summarize the background, main research gaps, overall goals, the panel discussion of the approach, limitations and challenges, and deliverables that were identified.
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Project description:Coma and disordered consciousness are common manifestations of acute neurological conditions and are among the most pervasive and challenging aspects of treatment in neurocritical care. Gaps exist in patient assessment, outcome prognostication, and treatment directed specifically at improving consciousness and cognitive recovery. In 2019, the Neurocritical Care Society (NCS) launched the Curing Coma Campaign in order to address the "grand challenge" of improving the management of patients with coma and decreased consciousness. One of the first steps was to bring together a Scientific Advisory Council including coma scientists, neurointensivists, neurorehabilitationists, and implementation experts in order to address the current scientific landscape and begin to develop a framework on how to move forward. This manuscript describes the proceedings of the first Curing Coma Campaign Scientific Advisory Council meeting which occurred in conjunction with the NCS Annual Meeting in October 2019 in Vancouver. Specifically, three major pillars were identified which should be considered: endotyping of coma and disorders of consciousness, biomarkers, and proof-of-concept clinical trials. Each is summarized with regard to current approach, benefits to the patient, family, and clinicians, and next steps. Integration of these three pillars will be essential to the success of the Curing Coma Campaign as will expanding the "curing coma community" to ensure broad participation of clinicians, scientists, and patient advocates with the goal of identifying and implementing treatments to fundamentally improve the outcome of patients.
| S-EPMC7392933 | biostudies-literature
Project description:BackgroundPatients with severe acute brain injuries (SABI) are at risk of living with long-term disability, frequent medical complications and high rates of mortality. Determining an individual patient's prognosis and conveying this to family members/caregivers can be challenging. We conducted a webinar with experts in neurosurgery, neurocritical care, neuro-palliative care, neuro-ethics, and rehabilitation as part of the Curing Coma Campaign, which is supported by the Neurocritical Care Society. The webinar discussed topics focused on prognostic uncertainty, communicating prognosis to family members/caregivers, gaps within healthcare systems, and research infrastructure as it relates to patients experiencing SABI. The purpose of this manuscript is to describe the themes that emerged from this virtual discussion.MethodsA qualitative analysis of a webinar "Prognostic Humility and Ethical Dilemmas in Acute Brain Injury" was organized as part of the Neurocritical Care Society's Curing Coma Campaign. A multidisciplinary group of experts was invited as speakers and moderators of the webinar. The content of the webinar was transcribed verbatim. Two qualitative researchers (NK and BM) read and re-read the transcription, and familiarized themselves with the text. The two coders developed and agreed on a code book, independently coded the transcript, and discussed any discrepancies. The transcript was analyzed using inductive thematic analysis of codes and themes that emerged within the expert discussion.ResultsWe coded 168 qualitative excerpts within the transcript. Two main themes were discussed: (1) the concept of prognostic uncertainty in the acute setting, and (2) lack of access to and evidence for quality rehabilitation and specialized continuum of care efforts specific to coma research. Within these two main themes, we found 5 sub-themes, which were broken down into 23 unique codes. The most frequently described code was the need for clinicians to acknowledge our own uncertainties when we discuss prognosis with families, which was mentioned 13 times during the webinar. Several strategies were described for speaking with surrogates of patients who have had a severe brain injury resulting in SABI. We also identified important gaps in the United States health system and in research to improve the care of patients with severe brain injuries.ConclusionAs a result of this webinar and expert discussion, authors identified and analyzed themes related to prognostic uncertainty with SABI. Recommendations were outlined for clinicians who engage with surrogates of patients with SABI to foster informed decisions for their loved one. Finally, recommendations for changes in healthcare systems and research support are provided in order to continue to propel SABI science forward to improve future prognostic certainty.
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Project description:BackgroundAlthough coma is commonly encountered in critical care, worldwide variability exists in diagnosis and management practices. We aimed to assess variability in coma definitions, etiologies, treatment strategies, and attitudes toward prognosis.MethodsAs part of the Neurocritical Care Society Curing Coma Campaign, between September 2020 and January 2021, we conducted an anonymous, international, cross-sectional global survey of health care professionals caring for patients with coma and disorders of consciousness in the acute, subacute, or chronic setting. Survey responses were solicited by sequential emails distributed by international neuroscience societies and social media. Fleiss κ values were calculated to assess agreement among respondents.ResultsThe survey was completed by 258 health care professionals from 41 countries. Respondents predominantly were physicians (n = 213, 83%), were from the United States (n = 141, 55%), and represented academic centers (n = 231, 90%). Among eight predefined items, respondents identified the following cardinal features, in various combinations, that must be present to define coma: absence of wakefulness (81%, κ = 0.764); Glasgow Coma Score (GCS) ≤ 8 (64%, κ = 0.588); failure to respond purposefully to visual, verbal, or tactile stimuli (60%, κ = 0.552); and inability to follow commands (58%, κ = 0.529). Reported etiologies of coma encountered included medically induced coma (24%), traumatic brain injury (24%), intracerebral hemorrhage (21%), and cardiac arrest/hypoxic-ischemic encephalopathy (11%). The most common clinical assessment tools used for coma included the GCS (94%) and neurological examination (78%). Sixty-six percent of respondents routinely performed sedation interruption, in the absence of contraindications, for clinical coma assessments in the intensive care unit. Advanced neurological assessment techniques in comatose patients included quantitative electroencephalography (EEG)/connectivity analysis (16%), functional magnetic resonance imaging (7%), single-photon emission computerized tomography (6%), positron emission tomography (4%), invasive EEG (4%), and cerebral microdialysis (4%). The most commonly used neurostimulants included amantadine (51%), modafinil (37%), and methylphenidate (28%). The leading determinants for prognostication included etiology of coma, neurological examination findings, and neuroimaging. Fewer than 20% of respondents reported routine follow-up of coma survivors after hospital discharge; however, 86% indicated interest in future research initiatives that include postdischarge outcomes at six (85%) and 12 months (65%).ConclusionsThere is wide heterogeneity among health care professionals regarding the clinical definition of coma and limited routine use of advanced coma assessment techniques in acute care settings. Coma management practices vary across sites, and mechanisms for coordinated and sustained follow-up after acute treatment are inconsistent. There is an urgent need for the development of evidence-based guidelines and a collaborative, coordinated approach to advance both the science and the practice of coma management globally.
| S-EPMC9283177 | biostudies-literature
Project description:BackgroundThe Curing Coma Campaign (CCC) is a multidisciplinary global initiative focused on evaluation, diagnosis, treatment, research, and prognostication for patients who are comatose due to any etiology. To support this mission, the CCC Ethics Working Group conducted a survey of CCC collaborators to identify the ethics priorities of the CCC and the variability in priorities based on country of practice.MethodsAn electronic survey on the ethics priorities for the CCC was developed using rank-choice questions and distributed between May and July 2021 to a listserv of the 164 collaborators of the CCC. The median rank for each topic and subtopic was determined. Comparisons were made on the basis of country of practice.ResultsThe survey was completed by 93 respondents (57% response rate); 67% practiced in the United States. On the basis of respondent ranking of each topic, the prioritization of ethics topics across respondents was as follows: (1) clinical care, (2) diagnostic definitions, (3) clinical research, (4) implementation/innovation, (5) family, (6) data management, (7) public engagement/perceptions, and (8) equity. Respondents who practiced in the United States were particularly concerned about public engagement, the distinction between clinical care and research, disclosure of results from clinical research to families, the definition of "personhood," and the distinction between the self-fulfilling prophecy/nihilism and medical futility. Respondents who practiced in other countries were particularly concerned about diagnostic modalities for clinical care, investigational drugs/devices for clinical research, translation of research into practice, and the definition of "minimally conscious state."ConclusionsCollaborators of the CCC considered clinical care, diagnostic definitions, and clinical research the top ethics priorities of the CCC. These priorities should be considered as the CCC explores ways to improve evaluation, diagnosis, treatment, research, and prognostication of patients with coma and associated disorders of consciousness. There is some variability in ethics priorities based on country of practice.
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Project description:Effective treatment options for patients with life-threatening neurological disorders are limited. To address this unmet need, high-impact translational research is essential for the advancement and development of novel therapeutic approaches in neurocritical care. "The Neurotherapeutics Symposium 2019-Neurological Emergencies" conference, held in Rochester, New York, in June 2019, was designed to accelerate translation of neurocritical care research via transdisciplinary team science and diversity enhancement. Diversity excellence in the neuroscience workforce brings innovative and creative perspectives, and team science broadens the scientific approach by incorporating views from multiple stakeholders. Both are essential components needed to address complex scientific questions. Under represented minorities and women were involved in the organization of the conference and accounted for 30-40% of speakers, moderators, and attendees. Participants represented a diverse group of stakeholders committed to translational research. Topics discussed at the conference included acute ischemic and hemorrhagic strokes, neurogenic respiratory dysregulation, seizures and status epilepticus, brain telemetry, neuroprognostication, disorders of consciousness, and multimodal monitoring. In these proceedings, we summarize the topics covered at the conference and suggest the groundwork for future high-yield research in neurologic emergencies.
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