Long-term outcome after traumatic brain injury : studies of individuals from northern Sweden

Sammanfattning: As traumatic brain injury (TBI) is as one of the major causes of long-term disability, there is an increasing interest in the long-term outcome of TBI. The overall aim of this thesis was to increase our knowledge and understanding of the situation for individuals many years post injury, with regard to demographics, injury characteristics and primary outcome, long-term functioning and disability, health-related quality of life, life satisfaction, self-appraisal of the impact of the TBI and sense of coherence.In study I, data was retrospectively collected on those individuals in Norrbotten, northern Sweden, with a computed tomography (CT) verified TBI and brain injury symptoms, who had been transferred for neurosurgical care between 1992 to 2001. A total of 332 individuals, 250 men and 82 women, were registered. The findings revealed that a majority were older men with a mild TBI following a fall. Younger individuals were fewer in number but more often had a severe TBI from a traffic accident. Most individuals received post-acute care and brain injury rehabilitation. A majority had a moderate or severe disability, but many were discharged back from hospital and sent home with no major changes in their physical or social environment. In study II, 88 individuals (age between 18 and 65 at the time of assessment, to represent individuals of working age) were included and their functioning and disability were assessed with internationally established TBI outcome measures, on average 10 years (range 6-15 years) post injury. There was an improvement in overall outcomes from the time of discharge from inpatient rehabilitation to follow-up, and many had a high degree of motor and cognitive functioning, which enabled them to live independently in their own home without assistance. There remained, however, a disability related to community reintegration and social participation. This affected their productivity and to some degree their marital stability, factors which were related to the age at the time of injury and the severity of the injury. In study III, health-related quality of life (HRQoL) and life satisfaction (LS) were assessed in 67 individuals, and compared with reference values from the general population. HRQoL, as well as LS, was lower compared with the general population. Multivariate statistical analyses showed that the individuals’ own appraisal of the impact of the TBI, along with vocational productivity, were most strongly associated with their current physical health and overall satisfaction with life. In study IV, sense of coherence (SOC) and the influence on self-rated LS of SOC, along with measures of functioning and disability, sex, age at injury, injury severity and time since injury were assessed in 66 individuals. SOC did not differ from the general population, and there was a strong relationship between SOC and LS indicating that the individuals’ sense of preservation of good health was strongly associated with high LS. High LS was also strongly associated with emotional factors and social participation, together with longer time post-injury and a more severe injury sustained at a later age.In conclusion, the results indicate that many individuals with a TBI can achieve and maintain a high degree of functioning many years after the injury. However, emotional and inter-relational problems remain and impact on social activities and participation. Many individuals experienced a reduced HRQoL and LS. The individuals’ perception of the low impact of the injury and their positive SOC were firmly associated with high LS. These results confirm that TBI can lead to long-term disability and emphasize the need for support systems and rehabilitation programmes that can meet the individuals’ needs, with regard to emotional factors, social participation and overall satisfaction with life, in a long-term perspective.