Prevalence of the Minimally Conscious State Among Institutionalized Patients in the Netherlands: A Nationwide Study.

BACKGROUND AND OBJECTIVES: The minimally conscious state (MCS) is a prolonged disorder of consciousness (pDoC) and one of the most severe outcomes of acquired brain injury. Prevalence data are scarce. The aim of this study was to establish the nationwide point prevalence of institutionalized patients in MCS in the Netherlands. METHODS: This was a descriptive cross-sectional study in which all 86 Dutch hospitals, all 5 specialized pDoC rehabilitation facilities, and all 274 nursing homes were asked whether they were treating patients with a pDoC on the point prevalence date of September 15, 2021. Each patient's legal representative provided informed consent for their inclusion. Patient level of consciousness was verified using the Coma Recovery Scale-Revised (CRS-R) in a single assessment session performed in the facility of residence by an experienced physician. Data on patient demographics, etiology, level of consciousness, facility of residence, and clinical status were collected from a questionnaire by the treating physician. The prevalence of institutionalized patients in MCS of per 100,000 members of the Dutch population was calculated, based on actual census data. RESULTS: Seventy patients were reported to have a pDoC, of whom 6 were excluded. The level of consciousness was verified for 49 patients while for 15, it could not be verified. Of the patients verified, 38 had a pDoC, of whom 32 were in MCS (mean age 44.8 years, 68.8% male). The prevalence of institutionalized patients in MCS is 0.2-0.3 per 100,000 Dutch inhabitants. Traumatic brain injury was present in 21 of 32 patients (65.6%). Specialized pDoC rehabilitation was received by 17 of 32 patients (53%), with the rest admitted to nursing homes. The most frequent signs of consciousness on the CRS-R were visual pursuit, reproducible movement to command, and automatic motor response. DISCUSSION: This nationwide study revealed a low prevalence of institutionalized patients in MCS in the Netherlands. These findings are now being used to organize pDoC care in this country.

Post-Acute Level Of Consciousness scale revised (PALOC-sr): adaptation of a scale for classifying the level of consciousness in patients with a prolonged disorder of consciousness.

OBJECTIVE: To present an updated version of the 'Post-acute Level Of Consciousness scale' (PALOC-s), in accordance with the latest scientific insights. METHODS: Within the context of a research project, 20 years ago, the PALOC-s was developed for the purpose of following the development of the level of consciousness of young unconscious patients participating in a rehabilitation program. Meanwhile, the understanding of the behavior related to different levels of consciousness has developed and terminology has changed, resulting in the need to revise the PALOC-s. With the preservation of the original description of the eight hierarchical levels of PALOC-s, adaptations are made in the terminology and grouping of these levels. RESULTS AND CONCLUSION: This manuscript presents the revised version of PALOC-sr, which is suitable for use in clinical practice. The validation of this scale is recommended for its optimal use in future (international) research projects.

Towards consensus on visual pursuit and visual fixation in patients with disorders of consciousness. A Delphi study.

BACKGROUND: The aim of this Delphi study was to reach consensus about definition, operationalization and assessment of visual pursuit (VP) and visual fixation (VF). METHODS: In a three-round international Delphi study, clinical and research experts on disorders of consciousness indicated their level of agreement on 87 statements using a 5-point Likert scale. Consensus for agreement was defined by a median of 5, an interquartile range (IQR) ≤ 1, and ≥ 80% indicating moderate or strong agreement. RESULTS: Forty-three experts from three continents participated, 32 completed all three rounds. For VP, the consensus statements with the highest levels of agreement were on the term 'pursuit of a visual stimulus', the description 'ability to follow visually in horizontal and/or vertical plane', a duration > 2 s, tracking in horizontal and vertical planes, and a frequency of more than 2 times per assessment. For VF, consensus statements with the highest levels of agreement were on the term 'sustained VF', the description 'sustained fixation in response to a salient stimulus', a duration of > 2 s and a frequency of 2 or more times per assessment. The assessment factors with the highest levels of agreement were personalized stimuli, the use of eye tracking technology, a patient dependent time of assessment, sufficient environmental light, upright posture, and the necessity to exclude ocular/oculomotor problems. CONCLUSION: This first international Delphi study on VP and VF in patients with disorders of consciousness provides provisional operational definitions and an overview of the most relevant assessment factors.

Are visual functions diagnostic signs of the minimally conscious state? an integrative review.

Visual pursuit (VP) and visual fixation (VF) have been recognized as the first signs of emerging consciousness and, therefore, are considered indicative of the minimally conscious state (MCS). However, debate exists about their status as they are considered either conscious reactions or reflexes. The aim of this study is to review the evidence of the definition, operationalization, and assessment of VP and VF in unconscious patients. PubMed and EMBASE were searched for relevant papers between May 26, 1994 and October 1, 2016. In addition, an internet search was done to identify other relevant papers, reports and manuals of assessment methods. Papers were included if the definition, operationalization, or assessment method of VP and VF was discussed in patients with disorders of consciousness. We identified 2364 articles, of which 38 were included. No uniform definitions of VP and VF were found. VP and VF were operationalized differently, depending on which scale was used. The Coma Recovery Scale-revised and the Sensory Tool to Assess Responsiveness were the only diagnostic scales found; the other scales were developed to monitor DOC patients. The use of a mirror was the most sensitive method for detecting VP and VF. The literature about the importance VP and VF in relation with consciousness is controversial. This integrative review shows a lack of consensus regarding the definition, operationalization, and assessment of VP and VF. International consensus development about the definition, operationalization, and assessment of VP and VF is recommended.

Ten-to-twelve years after specialized neurorehabilitation of young patients with severe disorders of consciousness: A follow-up study.

OBJECTIVE: To explore the long-term outcome of young patients with disorders of consciousness who had received intensive neurorehabilitation. METHODS: A cross-sectional cohort study, in which the survival, level of consciousness, functional independence, mobility, communication and living situation were determined by means of a structured questionnaire. The cohort consisted of 44 children and young adults, originally either in a prolonged Vegetative State/Unresponsive Wakefulness Syndrome (VS/UWS, n = 33) or a Minimally Conscious State (MCS, n = 11) who had received a specialized neurorehabilitation programme 10-12 years earlier. RESULTS: Response rate was 72% (34/44). Eleven patients were deceased, 10 of whom were in VS/UWS or MCS at discharge from the programme. Of the remaining 23 patients, 19 were conscious. Twelve lived independently, of whom six required some household support. One conscious patient lived permanently in a long-term care facility. All other patients lived either independently or with their parents. None of the VS/UWS or MCS patients showed any functional recovery. CONCLUSION: Two main long-term outcome scenarios can be recognized. Two-thirds of the participating patients who were conscious at programme discharge were able to live independently, whereas almost two-thirds of the participating patients who were in VS/UWS or MCS at discharge subsequently died.

Repeated measurements of the auditory oddball paradigm is related to recovery from the vegetative state.

The auditory oddball response has been found to be of predictive value for neurologic outcome at the early stages of coma. In the present study, the auditory oddball response was examined longitudinally during the recovery from the vegetative state to consciousness. This response was repeatedly examined every 2 weeks for an average period of 3.5 months in severely brain-injured patients. Results showed that amplitude of the auditory oddball response was unrelated to the behavioral changes during the patients' recovery from the vegetative state to consciousness. However, the presence and size of a negative potential at about 350 milliseconds predicted behavioral outcome, both for the short and long term (2 to 3 years after injury). Practical and theoretical implications of these findings are discussed.

Course of recovery and prediction of outcome in young patients in a prolonged vegetative or minimally conscious state after severe brain injury: An exploratory study.

AIMS: To explore the course of recovery of consciousness and factors predicting the outcome of severe brain injury with a prolonged period of unconsciousness in children and young adults receiving a specialized rehabilitation treatment, the Early Intensive Neurorehabilitation Programme (EINP). METHODS: A cohort of forty-four patients aged 1.6-25.5 years (M=16.0) with traumatic acquired brain injury (TBI) or non-traumatic acquired brain injury (nTBI) were examined using the Western Neuro Sensory Stimulation Profile every two weeks, from the application for EINP until discharge. The level of consciousness was assessed with the Post-Acute Level of Consciousness Scale, and the level of disability was determined by the Disability Rating Scale. Long-term level of disability of all TBI patients (N=32) was assessed between 2.0 and 4.4 years after discharge from EINP. RESULTS: Two-thirds of all patients recovered to consciousness. Three recovery patterns were identified: remaining in a vegetative state (VS), slow recovery of consciousness, and fast recovery of consciousness. In the long-term, 11 of the TBI patients were severely disabled, 13 were moderately disabled, and 4 were mildly disabled. All TBI patients who were in VS at discharge either had deceased, or recovered to a very severely disabled state. CONCLUSIONS: Three recovery patterns identified in an early stage after starting EINP made it possible to predict long-term level of disability.

[Vegetative or minimally conscious state?]. / Vegetatief of laagbewust? Het moeilijke onderscheid tussen niets weten en een beetje.

We describe the clinical course of a 51-year-old woman in a vegetative state and of a 63-year-old woman in a minimally conscious state. The difference between these two states is an important one, as clinical course, prognosis and medical-ethical considerations of both are different. In practice it is difficult to distinguish between a vegetative state and a minimally conscious state, but the use of a Post-Acute Level of Consciousness scale helps to illustrate the differences. Expertise, research, and application of functional neuro-imaging techniques (PET, fMRI) might also be useful. The differences between these two states regarding rehabilitation, pain management and medical-ethical decisions are important. The effects of neuro-rehabilitation and the implications of a minimally conscious state for patients and their proxies need further investigation.

Autonomic reactivity to sensory stimulation is related to consciousness level after severe traumatic brain injury.

OBJECTIVE: To examine changes in the activity of the autonomic nervous system (ANS) that are related to recovery to consciousness in the post-acute phase after severe traumatic brain injury (sTBI). METHODS: Skin conductance and heart rate reactivity to sensory stimulation were recorded every 2 weeks for an average period of 3.5 months in 16 adolescent patients, during the assessment of their level of consciousness (LoC), and their cognitive and functional behaviour. RESULTS: Both heart rate variability (HRV) and skin conductance level (SCL) in reaction to sensory stimulation changed with recovery to consciousness. Indices of HRV and SCL that represent sympathetic activity of the autonomic nervous system (ANS) increased with recovery, whereas indices that represent parasympathetic activity decreased. In addition, we observed an increase in sympathovagal balance of the ANS with recovery. CONCLUSIONS: Recovery to consciousness determined by clinical observation in sTBI in the post-acute phase is related to changes in SCL and HRV during sensory stimulation. ANS reactivity to environmental stimulation can therefore give objective supplementary information about the clinical state of sTBI patients, and can contribute to decision-making in the treatment policy of unresponsive patients. SIGNIFICANCE: These findings demonstrate that autonomic reactivity can be informative concerning how a severely damaged nervous system reacts to environmental stimulation and how, in a recovering nervous system, this reactivity changes.