Massachusetts General Hospital, Boston, MA, USA.
Division of Neurosciences Critical Care, Departments of Neurology, Neurosurgery, and Anesthesiology and Critical Care Medicine, The Johns Hopkins University and The Johns Hopkins Hospital, Baltimore, MD, USA.
Neurocrit Care. 2023 Dec;39(3):586-592. doi: 10.1007/s12028-023-01803-4. Epub 2023 Aug 23.
The convergence of an interdisciplinary team of neurocritical care specialists to organize the Curing Coma Campaign is the first effort of its kind to coordinate national and international research efforts aimed at a deeper understanding of disorders of consciousness (DoC). This process of understanding includes translational research from bench to bedside, descriptions of systems of care delivery, diagnosis, treatment, rehabilitation, and ethical frameworks. The description and measurement of varying confounding factors related to hospital care was thought to be critical in furthering meaningful research in patients with DoC. Interdisciplinary hospital care is inherently varied across geographical areas as well as community and academic medical centers. Access to monitoring technologies, specialist consultation (medical, nursing, pharmacy, respiratory, and rehabilitation), staffing resources, specialty intensive and acute care units, specialty medications and specific surgical, diagnostic and interventional procedures, and imaging is variable, and the impact on patient outcome in terms of DoC is largely unknown. The heterogeneity of causes in DoC is the source of some expected variability in care and treatment of patients, which necessitated the development of a common nomenclature and set of data elements for meaningful measurement across studies. Guideline adherence in hemorrhagic stroke and severe traumatic brain injury may also be variable due to moderate or low levels of evidence for many recommendations. This article outlines the process of the development of common data elements for hospital course, confounders, and medications to streamline definitions and variables to collect for clinical studies of DoC.
一个神经危重病学专家跨学科团队的融合，旨在组织意识障碍治疗运动，这是首次协调国家和国际研究努力，旨在更深入地了解意识障碍（DoC）。这一理解过程包括从实验室到临床的转化研究、护理服务系统的描述、诊断、治疗、康复和伦理框架。人们认为，描述和测量与医院护理相关的各种混杂因素对于意识障碍患者的有意义研究至关重要。跨学科的医院护理在地理区域以及社区和学术医疗中心之间存在固有差异。监测技术、专家咨询（医疗、护理、药剂、呼吸和康复）、人员配备资源、专科重症和急性护理病房、专科药物以及特定的手术、诊断和介入程序和影像学的获取情况各不相同，而这些因素对患者意识障碍结局的影响在很大程度上是未知的。意识障碍的病因异质性是患者护理和治疗存在一些预期差异的原因，这就需要为跨研究的有意义测量制定通用术语和数据元素集。由于许多建议的证据水平为中等或低，因此在出血性中风和严重创伤性脑损伤中遵循指南也可能存在差异。本文概述了制定用于医院病程、混杂因素和药物的通用数据元素的过程，以简化意识障碍临床研究中定义和变量的收集。
