Outcome in the first year following severe traumatic brain injury: a New Zealand study of the impact on patients and their primary caregivers

This research project describes the first year following severe traumatic brain injury (TBI) for 84 adults and their primary caregivers. Study 1 examines the utility of a measure of severity of injury, somatosensory evoked potentials (SEP), in predicting the 1 year outcome for 76 patients. Study 2 describes both the 6 month and 1 year outcome for 65 patients. Finally, Study 3 details the status of 52 primary caregivers 6 months and 1 year following the injury of their family member. An examination of the utility of SEPѕ, obtained within 24 hours of injury, in predicting outcome at 1 year showed that SEP 3 was associated with an unfavourable outcome (death, persistent vegetative state, or severe disability) in 100% of cases, and with death in 77% of cases. The absence of SEPѕ bilaterally was associated with death in 90% of cases. SEPѕ were more effective at predicting outcome as measured by the Glasgow Outcome Scale than the Glasgow Coma Scale score. The level of accuracy required for making triage decisions is discussed. Severe TBI resulted in pervasive impairments in cognitive, emotional, and behavioural abilities and significant disruption to social functioning. Despite an improvement in cognitive functioning between 6 months and 1 year, deficits in many aspects of cognitive functioning were still evident at 1 year postinjury. However, the prevalence of emotional and behavioural disturbance and disrupted social functioning remained consistent through the first year postinjury. The TBI patient’s levels of cognitive and behavioural impairments were significant indicators of the patient’s social functioning, including employment, independence, and social contact, at 1 year postinjury. Primary caregivers reported high levels of psychosocial difficulties and various forms of burden as a result of caring for the TBI patient. Despite some improvement in the caregivers’ social adjustment, their levels of anxiety and depression remained relatively constant in the first year postinjury. The caregivers appraisal of the TBI patient’s level of functioning significantly predicted caregiver level of burden at both 6 months and 1 year. However, those aspects of TBI patient functioning that were most predictive of caregiver burden changed between 6 months and 1 year postinjury. This suggested that caregivers adapted over time to some aspects of TBI patient impairment, while other aspects may become more salient at later stages postinjury. Overall, it was the TBI patient’s loss of social contact that was the most consistent predictor of caregiver level of subjective burden. The implications of these findings for rehabilitation are outlined. Measures of severity of injury were found to predict only gross categories of outcome following severe TBI. Despite this, they can be used to estimate approximate rehabilitation needs and prepare the family for the likely level of disability in the TBI patient. The findings from this research project also suggest the need for a comprehensive neuropsychological assessment prior to vocational rehabilitation. Programmes designed to assist family caregivers of people with severe TBI need to be flexible enough to adapt to the needs of caregivers, which change over time. It is the TBI patient’s loss of social contact that the caregivers find consistently distressing. While appropriate vocational rehabilitation may go some way towards reintegrating the TBI patient back into the social world, programmes aimed at reducing the impact of cognitive deficits and the frequency of behavioural problems are also required to reduce both TBI patient and caregiver distress