Outcome registry of early intensive neurorehabilitation in patients with disorders of consciousness: study protocol of a prospective cohort study

Background: Prolonged disorders of consciousness (PDOC) may occur after severe brain injury. Two diagnostic entities are distinguished within PDOC: unresponsive wakefulness syndrome (UWS, previously known as vegetative state) and minimally conscious state (MCS). Patients with PDOC may benefit from early intensive neurorehabilitation (EIN). In the Netherlands, the EIN programme is provided by one designated expert rehabilitation centre and forms the starting point of a dedicated chain of specialised rehabilitation and care for this group. This study project, called DOCTOR: Disorders of Consciousness; Treatment and Outcomes Registry, sets up a registry and systematically investigates multiple short- and long-term outcomes of patients with PDOC who receive EIN. Methods: Single-centre prospective cohort study with a 2-year follow-up period. Patients with PDOC due to acute brain injury who receive EIN, aged 16 years and older are included. Measurements will take place at start EIN, in week 5, 10, and at discharge from the EIN programme (duration = max 14 weeks) and at week 28, 40, 52, and 104 after admission to the EIN programme, following patients through the health-care chain. Outcome measures are the changes over time in level of consciousness, using the Coma Recovery Scale-Revised; the frequency and type of medical complications; the mortality rate; level of disability, including the level of motor, cognitive, behavioural and emotional functioning; participation; and quality of life. Secondary outcomes include self-efficacy of caregivers, caregivers’ strain and cost-effectiveness of the programme. Discussion: The DOCTOR study will provide insight in the recovery patterns and predictors of recovery for multiple outcomes in PDOC patients after following EIN. The results of the study will enable us to benchmark and improve EIN and the organisation of the health-care chain, both for patients with PDOC and for their families. Trial registration: Netherlands Trial Register, NL 8138. Retrospectively registered 6 November 2019

The vegetative state/unresponsive wakefulness syndrome: a systematic review of prevalence studies

One of the worst outcomes of acquired brain injury is the vegetative state, recently renamed ‘unresponsive wakefulness syndrome’ (VS/UWS). A patient in VS/UWS shows reflexive behaviour such as spontaneous eye opening and breathing, but no signs of awareness of the self or the environment. We performed a systematic review of VS/UWS prevalence studies and assessed their reliability. Medline, Embase, the Cochrane Library, CINAHL and PsycINFO were searched in April 2013 for cross-sectional point or period prevalence studies explicitly stating the prevalence of VS/UWS due to acute causes within the general population. We additionally checked bibliographies and consulted experts in the field to obtain ‘grey data’ like government reports. Relevant publications underwent quality assessment and data-extraction. We retrieved 1032 papers out of which 14 met the inclusion criteria. Prevalence figures varied from 0.2 to 6.1 VS/UWS patients per 100 000 members of the population. However, the publications’ methodological quality differed substantially, in particular with regards to inclusion criteria and diagnosis verification. The reliability of VS/UWS prevalence figures is poor. Methodological flaws in available prevalence studies, the fact that 5/14 of the studies predate the identification of the minimally conscious state (MCS) as a distinct entity in 2002, and insufficient verification of included cases may lead to both overestimation and underestimation of the actual number of patients in VS/UWS

A survey on pain assessment in patients with disorders of consciousness in Dutch hospitals and nursing homes

The extent of variation in the use of behavioural pain observation tools, documentation and pain protocols in patients with acquired brain injury (ABI) and with disorders of consciousness (DOC) is unknown. A national survey was undertaken in Dutch hospitals with neurology and neurosurgery nursing wards and nursing homes. From 43 facilities (35 hospital wards, 8 nursing homes), 106 surveys were analysed; completion/participation rate was 88% and 40% respectively. Some 16% of the facilities used a behavioural pain observation tool. This was more often in general hospitals (24%) than in university hospitals (10%) or nursing homes (0%). Variation in measuring/observing pain could be assumed in 72% of facilities and variation in documentation in 88%. A specific pain protocol was used in 14% of the facilities. This study shows an undesirable variation in pain management in ABI patients with DOC, which should be addressed in the future to enhance quality of car

États de Conscience Altérée : Soins Paliiatifs et Décisions de Fin de Vie

Les patients en état d’éveil non-répondant et en état de conscience minimale constituent une population spécifique particulièrement fragile, tant sur le plan physique que cognitif. Ces patients sont dès lors dépendant de tiers pour leurs besoins vitaux ainsi que leur autonomie décisionnelle, notamment concernant les limitations thérapeutiques et de fin de vie. Nous encourageons donc, à travers ces recommandations, (1) un renforcement du droit à l’autodétermination malgré l’incapacité communicative de ces patients, (2) une prise de décision concertée en prenant en considération les différents biais cognitifs influençant nos prises de décisions, et (3) la mise en application des bonnes pratiques médicales (utilité ou futilité des traitements, applications des traitements recommandés en vue de soulager les symptômes physiques). Nous insistons sur la nécessité d’une séparation entre le domaine judiciaire et médical dans les décisions entourant la fin de vie de ces patients, tout en mettant en avant l’influence importante du contexte légal dans lequel ces décisions sont prises

Complexe neurologische aandoeningen in de langdurige zorg: Een verkenning van aantallen, patiëntkenmerken en indicaties

Veel patiënten met een complexe neurologische aandoening, zoals de ziekte van Parkinson, multiple sclerose of restverschijnselen van niet-aangeboren hersenletsel, doen vroeg of laat in hun ziekteproces een beroep op de langdurige zorg. Dat deze mensen een andere zorgbehoefte hebben dan de algemene verpleeghuispopulatie is bekend, maar van hun aantallen bestaan slechts schattingen. Dit onderzoek, mogelijk gemaakt door de Verenso Beurs voor wetenschappelijk onderzoek, heeft als doel te achterhalen hoeveel mensen in Nederland een indicatie voor langdurige zorg hebben én een diagnose die wijst op een ernstige aandoening van het zenuwstelsel, anders dan dementie. We combineerden grote datasets van het Centraal Bureau voor Statistiek om zo de prevalentie van een aantal complexe neurologische aandoeningen onder mensen met een indicatie voor langdurige zorg in een verpleeghuis te bepalen. Op 31-12-2015 hadden 121.749 mensen in Nederland een indicatie die toegang geeft tot langdurige zorg in een verpleeghuis. Van hen hebben 9.398 mensen een complexe neurologische aandoening. De ziekte van Parkinson en aanverwante aandoeningen komen bij 4% van de totale langdurige-zorgpopulatie voor. Patiënten met een zeldzamere aandoening zijn 10 tot 20 jaar jonger dan de gemiddelde verpleeghuispatiënt. Er zijn in de langdurige zorg meer mensen met een complexe neurologische aandoening, anders dan dementie, dan tot nu toe werd aangenomen. Door verdere academisering van de langdurige zorg en de ontwikkeling van doelgroepexpertisecentra moet het mogelijk zijn ook deze patiënten en hun naasten passende zorg te bieden

The dilemma of hydrocephalus in prolonged disorders of consciousness

Prolonged disorders of consciousness (DOC) are considered to be amongst the most severe outcomes after acquired brain injury. Medical care for these patients is mainly focused on minimizing complications, since treatment options for patients with unresponsive wakefulness or minimal consciousness remain scarce. The complication rate in patients with DOC is high, both in the acute hospital setting as in the rehabilitation or long-term care phase. Hydrocephalus is one of these well-known complications and usually develops quickly following acute changes in cerebrospinal fluid (CSF) circulation after different types of brain damage. However, hydrocephalus may also develop with a significant delay, weeks or even months after the initial injury, reducing the potential for natural recovery of consciousness. In this phase, hydrocephalus is likely to be missed in DOC patients, since their limited behavioral responsiveness camouflages the classic signs of increased intracranial pressure or secondary normal-pressure hydrocephalus. Moreover, the development of late-onset hydrocephalus may exceed the period of regular outpatient follow-up. Several controversies remain about the diagnosis of clinical hydrocephalus in patients with ventricular enlargement after severe brain injury. In this article, we discuss both the difficulties in diagnosis and dilemmas in treatment of CSF disorders in patients with prolonged DOC and review evidence from the literature to advance an active surveillance protocol for the detection of this late, but treatable complication. Moreover, we advocate a low threshold for cerebrospinal fluid diversion when hydrocephalus is suspected, even months or years after brain injury

Complexe neurologische aandoeningen in de langdurige zorg: Een verkenning van aantallen, patiëntkenmerken en indicaties

Veel patiënten met een complexe neurologische aandoening, zoals de ziekte van Parkinson, multiple sclerose of restverschijnselen van niet-aangeboren hersenletsel, doen vroeg of laat in hun ziekteproces een beroep op de langdurige zorg. Dat deze mensen een andere zorgbehoefte hebben dan de algemene verpleeghuispopulatie is bekend, maar van hun aantallen bestaan slechts schattingen. Dit onderzoek, mogelijk gemaakt door de Verenso Beurs voor wetenschappelijk onderzoek, heeft als doel te achterhalen hoeveel mensen in Nederland een indicatie voor langdurige zorg hebben én een diagnose die wijst op een ernstige aandoening van het zenuwstelsel, anders dan dementie. We combineerden grote datasets van het Centraal Bureau voor Statistiek om zo de prevalentie van een aantal complexe neurologische aandoeningen onder mensen met een indicatie voor langdurige zorg in een verpleeghuis te bepalen. Op 31-12-2015 hadden 121.749 mensen in Nederland een indicatie die toegang geeft tot langdurige zorg in een verpleeghuis. Van hen hebben 9.398 mensen een complexe neurologische aandoening. De ziekte van Parkinson en aanverwante aandoeningen komen bij 4% van de totale langdurige-zorgpopulatie voor. Patiënten met een zeldzamere aandoening zijn 10 tot 20 jaar jonger dan de gemiddelde verpleeghuispatiënt. Er zijn in de langdurige zorg meer mensen met een complexe neurologische aandoening, anders dan dementie, dan tot nu toe werd aangenomen. Door verdere academisering van de langdurige zorg en de ontwikkeling van doelgroepexpertisecentra moet het mogelijk zijn ook deze patiënten en hun naasten passende zorg te bieden.Pattern Recognition and Bioinformatic

Unexpected emergence from the vegetative state: delayed discovery rather than late recovery of consciousness

Background: The vegetative state, also known as the unresponsive wakefulness syndrome, is one of the worst possible outcomes of acquired brain injury and confronts rehabilitation specialists with various challenges. Emergence to (minimal) consciousness is classically considered unlikely beyond 3–6 months after non-traumatic or 12 months after traumatic etiologies. A growing body of evidence suggests that these timeframes are too narrow, but evidence regarding chances of recovery is still limited. Objective: To identify the moment of recovery of consciousness in documented cases of late emergence from a vegetative state. Methods: Four cases of apparent late recovery of consciousness, identified within a prospective cohort study, were studied in-depth by analyzing medical, paramedical and nursing files and interviewing the patients’ families about their account of the process of recovery. Results: All patients were found to have shown signs of consciousness well within the expected time frame (5 weeks–2 months post-ictus). These behaviors, however, went unnoticed or were misinterpreted, leading to a diagnostic delay of several months to over 5 years. Absence of appropriate diagnostics, the use of erroneous terminology, sedative medication but also patient-related factors such as hydrocephalus, language barriers and performance fluctuations are hypothesized to have contributed to the delay. Conclusions: Delayed recognition of signs of consciousness in patients in a vegetative state may not only lead to suboptimal clinical care, but also to distorted prognostic figures. Discriminating late recovery from the delayed discovery of consciousness, therefore, is vital to both clinical practice and science. © 2019, The Author(s)

Effectiveness of rehabilitation interventions in improving emotional and functional status in hearing or visually impaired older adults: a systematic review with meta-analyses

Objective: To assess the effectiveness of non-equipment based rehabilitation interventions for older adults with an age-related hearing or visual impairment. Data sources: We searched PubMed, EMBASE, PsychInfo, CINAHL, and the Cochrane Central Register of Controlled Trials. Review methods: Two authors independently assessed trial eligibility, extracted data and assessed methodological quality. Controlled studies with more than 80% of participants aged 55 years and with rehabilitation interventions either separately or in combination with technical device provision were included. Meta-analyses were undertaken for the primary outcomes: emotional status, functional status, self-efficacy and social participation. All studies were categorized into 3 subgroups of intervention approaches (cognitive restructuring, education, and problem-solving), and subgroup analysis was performed. Results: Fourteen studies were identified: six on hearing impairment and eight on visual impairment, involving 1622 sensory impaired participants (mean age 70). Methodological quality of the studies was modest. Eight studies offered data for meta-analysis. No significant effects in favour of interventions on either emotional or functional status, self-efficacy, or social participation were found. In the subgroup analysis, only the problem-solving approach showed a positive effect on emotional status. Conclusions: This review found no effects of non-equipment based rehabilitation interventions on emotional and functional status, self-efficacy, and social participation. However, subgroup analysis showed problem-solving as a potential effective approach for positively affecting emotional status