Table 1.

Guidelines recommendations and related questions asked in the survey

EU guidelines recommendations	US guidelines recommendations	Questions asked
Diagnosis
They indicate three sources of data for diagnosing DoCs: bedside examination (i.e., behavioral assessment at the bedside through clinically validated scales), functional neuroimaging, and EEG		What DoC diagnostic tools do you use in your practice?
“Repeat clinical assessments in the subacute and chronic setting, using the Coma Recovery Scale – Revised” “The classification of consciousness levels should never be made based on an isolated assessment”	“Perform serial standardized assessments to improve diagnostic accuracy” “To reduce diagnostic error in individuals with prolonged DoC after brain injury, serial standardized neurobehavioral assessments should be performed with the interval of reassessment determined by individual clinical circumstances”	- How often is the clinical assessment repeated in your diagnostic protocol? - Do you practice regular patient follow-ups? If yes, how often? - What are the factors impacting the frequency of the follow-ups? - Has COVID-19 pandemics changed your practice in this regard?
	“Clinicians should attempt to increase arousal before performing evaluations to assess level of consciousness anytime diminished arousal is observed or suspected”	-Do you usually try to prime the patients’ arousal level before assessing their level of consciousness? If yes, how?
“Despite the absence of eligible studies, spontaneous motor behavior and automatic motor responses may be observed and documented in the patient charts”		- Do you observe the patient prior to actually doing your hands-on clinical assessment?
“Whenever feasible, consider positron emission tomography, resting-state functional magnetic resonance imaging (fMRI), active fMRI or EEG paradigms and quantitative analysis of high-density EEG to complement behavioral assessment in patients without command following at the bedside” “The CRS-R be used to classify the level of consciousness”		- Which of the following clinical tools do you usually use? (may choose more than one): Coma Recovery Scale-Revised (CRS-R) Full Outline of Unresponsiveness Score (FOUR) Nociception Coma Scale-Revised (NCS-R) Other (please specify) - Which of the following technological assessments of consciousness do you use in your clinical or research practice? (may choose more than one): H2O (PET) (FDG) PET Resting-state fMRI Active fMRI Standard EEG Quantitative analysis Qualitative analysis Sleep EEG Quantitative analysis Qualitative analysis High-density EEG Quantitative analysis Qualitative analysis Somatosensory-Evoked Potentials Brain stem-Evoked Potentials Event-Related Potentials Transcranial Magnetic Stimulation (TMS)-EEG Brain–Computer Interface (BCI) Other (specify) - If you use neuroimaging, what kind of paradigm do you perform? (may choose more than one): Resting state Passive sensory stimulation Active tasks (may choose more than one) None of the above
“Standardized clinical evaluation, EEG-based techniques and functional neuroimaging should be integrated for multimodal evaluation of patients with DoC.”	“In situations where there is continued ambiguity regarding evidence of conscious awareness despite serial neurobehavioral assessments, or where confounders to a valid clinical diagnostic assessment are identified, clinicians may use multimodal evaluations incorporating specialized functional imaging or electrophysiologic studies to assess for evidence of awareness not identified on neurobehavioral assessment that might prompt consideration of an alternate diagnosis”	- Is it possible in your center (e.g., in terms of technology and expertise) to integrate expert clinical evaluation (i.e., from > 10 years experts), EEG-based techniques, and/or functional neuroimaging for the evaluation of patients with DoCs? - How often are the approaches above combined? - What is the main challenge in the implementation of a multimodal assessment of consciousness in your program with regards to utilization of high-density EEG, PET, and fMRI?
Families counseling
	“Counsel families that for adults, MCS (vs vegetative state [VS]/ unresponsive wakefulness syndrome [UWS]) and traumatic (vs nontraumatic) etiology are associated with more favorable outcomes”. The AAN Guidelines also say that “when prognosis is poor, long-term care must be discussed”	- Do you or your team regularly counsel families or patient’s representatives/caregivers about the patient’s diagnosis, prognosis, and possible long-term care options? - If yes, when do you provide said counseling? - Has the COVID-19 pandemic changed your practice in this regard?
	“Clinicians must identify patient and family preferences early and throughout provision of care to help guide the decision-making process for persons with prolonged DoC.”	- Do you attempt to identify patient and family treatment preferences (e.g., therapeutic and palliative interventions) soon after admission? - Do you or your team inform families about the limitations of existing evidence concerning currently employed (standard) treatment and/or non-validated (e.g., experimental) treatment effectiveness and the related potential risks and harms?
Prognosis and rehabilitation
	“Structural MRI, SPECT, and the Coma Recovery Scale-Revised (CRS-R) can assist prognostication in adults”	- What methods do you use for assisting with outcome prognostication? - Does your team provide evidence-based prognosis information to family members of patients with DoC
	“Care for patients with prolonged DoC may benefit from a team of multidisciplinary rehabilitation specialists”	- Do you have a specific DoC rehabilitation program in your center? - Is the rehabilitation program regularly updated on the basis of repeated assessments of consciousness and/or of functional disability?
Pain
“The NCS-R [Nociceptive Coma Scale Revised] is considered for regular monitoring of signs of discomfort”	“Pain always should be assessed and treated […] and evidence supporting treatment approaches discussed”. They also say that “Clinicians should assess individuals with a DoC for evidence of pain or suffering and should treat when there is reasonable cause to suspect that the patient is experiencing pain […], regardless of level of consciousness. Clinicians should counsel families that there is uncertainty regarding the degree of pain and suffering that may be experienced by patients with a DoC […].”	- Do you specifically assess pain in patients with DoCs? If yes, how? - Would you treat pain if you are unsure about the patient’s level of consciousness based on bedside assessment? - Should pain be treated (e.g., through use of pain medications) regardless of the level of residual consciousness? If yes, how? - Do you counsel families about the difficulty of detecting pain in patients with DoCs?
Collaboration with other centers
Multicenter collaborations are needed		- Do you work collaboratively with other DoC centers/experts? If yes, in what context? Clinical Research Both
Nosology
	The AAN Guidelines say that “Recent evidence indicates that the term chronic VS/UWS should replace permanent VS, with duration specified”	- Should the term permanent VS or UWS be replaced with the "VS/UWS and its specific duration"?