Centre for Research Ethics and Bioethics, Uppsala University, Uppsala, Sweden.
Biogem, Biology and Molecular Genetics Research Institute, Ariano Irpino, AV, Italy.
J Neurol. 2024 Jan;271(1):395-407. doi: 10.1007/s00415-023-11956-z. Epub 2023 Sep 23.
Diagnostic, prognostic, and therapeutic procedures for patients with prolonged disorders of consciousness (pDoCs) vary significantly across countries and clinical settings, likely due to organizational factors (e.g., research vs. non-academic hospitals), expertise and availability of resources (e.g., financial and human). Two international guidelines, one from the European Academy of Neurology (EAN) and one from the American Academy of Neurology (AAN) in collaboration with the American Congress of Rehabilitation Medicine (ACRM) and the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR), were developed to facilitate consistent practice among professionals working with this challenging patient population. While the recommendations of both guidelines agree in principle, it remains an open issue how to implement them into clinical practice in the care pathway for patients with pDoCs. We conducted an online survey to explore health professional clinical practices related to the management of patients with pDoCs, and compare said practices with selected recommendations from both the guidelines. The survey revealed that while some recommendations are being followed, others are not and/or may require more honing/specificity to enhance their clinical utility. Particular attention should be given to the implementation of a multimodal assessment of residual consciousness, to the detection and treatment of pain, and to the impact of restrictions imposed by COVID-19 pandemics on the involvement of patients' families/representatives.
诊断、预后和治疗程序因国家和临床环境而异,可能是由于组织因素(如研究型与非学术型医院)、专业知识和资源可用性(如财务和人力)不同所致。有两份国际指南,一份来自欧洲神经病学会(EAN),一份来自美国神经病学会(AAN),与美国康复医学学会(ACRM)和国家残疾、独立生活和康复研究学会(NIDILRR)合作制定,旨在促进从事这一具有挑战性患者群体的专业人员之间的一致实践。尽管两份指南的建议原则上一致,但如何将其纳入 pDoC 患者护理路径中的临床实践仍然是一个悬而未决的问题。我们进行了一项在线调查,以探讨与管理 pDoC 患者相关的卫生专业人员的临床实践,并将这些实践与两份指南中的选定建议进行比较。调查结果表明,虽然有些建议正在得到遵循,但其他建议没有得到遵循,或者可能需要进一步细化/具体化,以提高其临床实用性。应特别注意对残余意识进行多模式评估、检测和治疗疼痛,以及 COVID-19 大流行对患者家属/代表参与的限制的影响。