Abstract
BackgroundProlonged 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.MethodsSingle-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.DiscussionThe 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 registrationNetherlands Trial Register, NL 8138. Retrospectively registered 6 November 2019.
Highlights
Prolonged disorders of consciousness (PDOC) may occur after severe brain injury
Prolonged disorders of consciousness (PDOC) (> 4 weeks) due to acquired brain injury (ABI) uncommon [1, 2] have a major impact on patients and their families [3]
Independent variables added to these models include age and gender of the caregiver and the level of consciousness (UWS, minimally conscious state (MCS), or conscious), and the cognitive (MoCA) and motor (FIM) status of the patients. In this manuscript we present the Disorders of Consciousness Treatment and Outcomes Registry (DOCTOR) study on outcomes of early intensive neurorehabilitation (EIN) in patients with PDOC due to acute brain injury
Summary
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). Prolonged disorders of consciousness (PDOC) (> 4 weeks) due to acquired brain injury (ABI) uncommon [1, 2] have a major impact on patients and their families [3]. Hypoxic-ischemic encephalopathy is the most common cause in UWS patients (38–50%) [9, 11], while cerebral haemorrhage is most common in MCS [9]. EIN focuses on (1) basic care and prevention of complications [12] (e.g. thrombo-embolic disease, contractures, skin breakdown, paroxysmal sympathetic hyperactivity), which cause a substantial raise in morbidity, discomfort and pain, and in healthcare costs [13]; (2) accurate assessment and treatment aimed to facilitate recovery of level of consciousness (LOC); (3) providing comprehensive education and empowerment of families to foster families’ coping
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