| Coma & Chronic Disorders of Consciousness | Rare Neurological Diseases  

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

Starting from the guidelines’ recommendations, the aim of the survey was to explore the clinicians’ actual clinical practice and their opinions about the reliability, relevance, and applicability of the guidelines in different contexts. Based on some differences between the EU and US guidelines and the actual practice declared by the respondents, the present survey indicates that some recommendations are less implemented than others. At the clinical level, in addition to the results above, it is interesting to highlight that the COVID-19 pandemics impacted two dimensions in particular of the care of patients with DoCs: follow-ups and family´s involvement. In both cases, the participants to the survey reported a reduction of visit frequency primarily due to restrictions to physical interaction. The survey also showed a number of good practices among professionals working with patients with DoCs, notably elaborating evidence-based prognosis, counseling families about the limitation of prognosis and pain detection as well as collaborating with other centers. These points should be considered by all clinicians working with these patients and promoted to facilitate more efficient and appropriate clinical treatment.

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.

 

Key Points:

  • 216 professionals from Europe, North America, Asia–Pacific and Africa participated in the survey (15 min to complete, included  questions about respondent demographics, diagnosis, families counseling, prognosis and rehabilitation, pain, collaborations with other centers, and nosology)
  • The most used diagnostic tool by respondents was bedside behavioral examination with standardized tools, followed by neurophysiological evaluation and structural neuroimaging
  • Almost all the respondents answered that their team provided evidence-based prognostic information to patients’ families.
  • enhancing a multimodal diagnostic approach, promoting a consistent treatment of pain and discomfort, and elaborating strategies for facing restrictions to the interaction with the patients’ representatives similar to those caused by the COVID-19 pandemics emerge among the most pressing needs

References:

Farisco M, Formisano R, Gosseries O, et al. International survey on the implementation of the European and American guidelines on disorders of consciousness [published correction appears in J Neurol. 2023 Nov 22;:]. J Neurol. 2024;271(1):395-407. doi:10.1007/s00415-023-11956-z

Co-author:
Nicolas Lejeune, Coma Science Group, GIGA-Consciousness, University of Liège
Anna Estraneo, IRCCS, Don Gnocchi Foundation, Florence and Sant’Angelo dei Lombardi

Publish on behalf of the Scientific Panel on Coma and chronic disorders of consciousness

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