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Acquired brain injury (ABI) diminishes quality of life (QoL) of affected individuals and their families. Fortunately, new multidimensional instruments such as the calidad de vida en daño cerebral (CAVIDACE) scale are available. However, differences in self- and proxy-reported QoL remain unclear. Therefore, this study examined these differences and identified predictors of QoL among individuals with ABI. This cross-sectional study comprised 393 adults with ABI (men: 60%; Mage = 54.65, SD = 14.51). Self-, family-, and professional-reported QoL were assessed using the CAVIDACE scale. Other personal and social variables were assessed as predictors of QoL. Professionals had the lowest QoL scores (M = 1.88, SD = 0.45), followed by family members (M = 2.02, SD = 0.44) and individuals with ABI (M = 2.10, SD = 0.43). Significant differences were found for almost all QoL domains, finding the highest correlations between family and professional proxy measures (r = 0.63). Hierarchical regression analysis revealed that sociodemographic, clinical, rehabilitation, personal, and social variables were significant predictors of QoL. It is necessary to use both self- and proxy-report measures of QoL. Additionally, the identification of the variables that impact QoL permits us to modify the interventions that are offered to these individuals accordingly.Implications for rehabilitationAcquired brain injury (ABI) causes significant levels of disability and affects several domains of functioning, which in turn can adversely affect quality of life (QoL).QoL is a multidimensional construct that is affected by numerous factors: sociodemographic, clinical, personal, social, etc; and also, with aspects related to the rehabilitation they receive after ABI.Rehabilitation programs should address the different domains of functioning that have been affected by ABI.Based on research findings about the QoL’s predictors, modifications could be made in the rehabilitation process; paying special attention to the depressive- and anosognosia process, as well as the importance of promoting social support, community integration, and resilience. Acquired brain injury (ABI) causes significant levels of disability and affects several domains of functioning, which in turn can adversely affect quality of life (QoL). QoL is a multidimensional construct that is affected by numerous factors: sociodemographic, clinical, personal, social, etc; and also, with aspects related to the rehabilitation they receive after ABI. Rehabilitation programs should address the different domains of functioning that have been affected by ABI. Based on research findings about the QoL’s predictors, modifications could be made in the rehabilitation process; paying special attention to the depressive- and anosognosia process, as well as the importance of promoting social support, community integration, and resilience.

Aims: Based on important predictors, global functional outcome after traumatic brain injury (TBI) may vary significantly over time. This study sought to: (1) describe changes in the Glasgow Outcome Scale–Extended (GOSE) score in survivors of moderate to severe TBI, (2) examine longitudinal GOSE trajectories up to 10 years after injury, and (3) investigate predictors of these trajectories based on socio-demographic and injury characteristics. Methods: Socio-demographic and injury characteristics of 97 TBI survivors aged 16–55 years were recorded at baseline. GOSE was used as a measure of TBI-related global outcome and assessed at 1-, 2-, 5-, and 10-year follow-ups. Hierarchical linear models were used to examine global outcomes over time and whether those outcomes could be predicted by: time, time*time, sex, age, partner relationship status, education, employment pre-injury, occupation, cause of injury, acute Glasgow Coma Scale score, length of post-traumatic amnesia (PTA), CT findings, and Injury Severity Score (ISS), as well as the interactions between each of the significant predictors and time*time. Results: Between 5- and 10-year follow-ups, 37% had deteriorated, 7% had improved, and 56% showed no change in global outcome. Better GOSE trajectories were predicted by male gender (p = 0.013), younger age (p = 0.012), employment at admission (p = 0.012), white collar occupation (p = 0.014), and shorter PTA length (p = 0.001). The time*time*occupation type interaction effect (p = 0.001) identified different trajectory slopes between survivors in white and blue collar occupations. The time*time*PTA interaction effect (p = 0.023) identified a more marked increase and subsequent decrease in functional level among survivors with longer PTA duration. Conclusion: A larger proportion of survivors experienced deterioration in GOSE scores over time, supporting the concept of TBI as a chronic health condition. Younger age, pre-injury employment, and shorter PTA duration are important prognostic factors for better long-term global outcomes, supporting the existing literature, whereas male gender and white collar occupation are vaguer as prognostic factors. This information suggests that more intensive and tailored rehabilitation programs may be required to counteract a negative global outcome development in survivors with predicted worse outcome and to meet their long-term changing needs.

Background: Traumatic brain injury (TBI) often leads to persistent difficulties with cognitive, emotional and vocational functioning, as well as reduced community integration and quality of life. Although many receive targeted rehabilitation services in the acute and sub-acute phase, studies have documented high levels of unmet needs for health care services in the chronic phase of TBI, frequently in emotional, vocational and cognitive domains. In the chronic phase, services are often provided in a primary care context, and should thus be tailored to the individual difficulties, including perspectives such as participation, community reintegration, social support and family functioning. Research on effective treatment options delivered in the community setting is, however, lacking. An innovative, home-based and individual goal-oriented intervention program performed in close collaboration with family members was developed in the US by Winter and colleagues. The intervention is currently being evaluated in a Norwegian population, within the context of a universal health coverage and a public health care system. In preparation for a future definite randomized controlled trial (RCT) evaluating the effectiveness of this intervention, the feasibility of the study protocol was assessed in line with recommendations for complex interventions from the Medical Research Council, UK.Methods: This feasibility trial applied a one group pre-post design, including a baseline assessment (T1) and follow up assessment immediately after the intervention (T2). Six adults with severe TBI (5 males, time since injury 7.5u20138.5 years) in metropolitan Oslo, Norway, were recruited and received the intervention. The intervention was manualized and consisted of six in-home visits and two telephone contacts, delivered over a period of 4 months. Three of the participants had participating family members. Primary feasibility objectives were to evaluate (i) recruitment and screening procedures, (ii) baseline and follow-up assessments, (iii) intervention delivery, (iv) order of primary and secondary outcome measures, and (v) acceptability.Results: Evaluation of the recruitment and screening procedures showed need of inclusion criteria adjustments. Baseline assessment was found to be too time consuming and was abbreviated to decrease participant burden. Intervention delivery was feasible. Outcome measures were reviewed and amendments were deemed necessary. Acceptability was high, with no drop outs. The participants showed high goal attainment at the end of the intervention. All participants said they would be willing to participate in a similar study at a later point in time.Discussion: The intervention was deemed feasible in a population of severe TBI and preliminary results seem promising. The feasibility trial led to important amendments to inclusion criteria, baseline assessment and outcome measures before commencement of the full-scale RCT. Importantly, results showed high acceptability and high goal attainment at an individual level, strengthening the feasibility and utility of the intervention. The RCT-study recruitment started in June 2018.