International survey on the implementation of the European and American guidelines on disorders of consciousness

J Neurol. 2024 Jan;271(1):395-407. doi: 10.1007/s00415-023-11956-z. Epub 2023 Sep 23.

Abstract

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.

Keywords: Bioethics; Clinical guidelines; Cognitive–motor dissociation; Coma; Disorders of consciousness; Ethics; Minimally conscious state; Neuroethics; Unresponsive wakefulness syndrome; Vegetative states.

MeSH terms

  • Consciousness Disorders / diagnosis
  • Consciousness Disorders / therapy
  • Consciousness*
  • Disabled Persons*
  • Humans
  • Prognosis
  • Rehabilitation Research / methods
  • United States