Speaking for themselves: how do adolescents define their quality of life after a traumatic brain injury?

© 2013 Dr. Ashley Marie Di BattistaTraumatic brain injury (TBI) is a leading cause of morbidity and mortality in young people (Yeates et al., 2002). The status of quality of life (QoL) in paediatric TBI is mixed. Our recent meta-analysis of paediatric QoL (Di Battista et al., 2012) found that good QoL outcomes are contingent on milder injuries, proxy reporting and early assessment whereas poor outcomes reflect more severe injuries and later assessment. Available paediatric QoL data is largely based on the health-related quality of life (HRQoL) paradigm; where a good outcome is contingent on what one can accomplish or achieve, as assessed by proxies. Information on the subjective well-being (SWB) component of QoL is limited. When estimating the HRQOL in adolescents, the presence of anxiety and depression and the quality of social relationships are important considerations, because adolescents are entrenched in social development during this phase of maturation. The influence of anxiety, depression and loneliness on HRQOL in adolescent survivors of TBI has not been documented. The goal of this study was to explore the adolescent experience of quality of life, anxiety, depression and loneliness after a traumatic brain injury. This study is a mixed-methods assessment of the impact of mood states and loneliness on quality of life (QoL) in adolescents who have survived a traumatic brain injury (TBI). METHOD: mixed method/cohort pilot study (11 adolescents, mild to severe TBI; 9 parents), using self-report (anxiety, depression, HRQoL, loneliness) and proxy-report measures (anxiety, depression and HRQoL) and clinical psychiatric interviews (adolescent only). The adolescent experience of these states is not accurately reflected by parental proxy. Self-reported depression and age at injury were associated with health-related quality of life outcomes, while anxiety was not. Severity of injury was not related to secondary outcomes. Adolescent narratives revealed that having experienced a TBI does not a priori impact upon perceived QoL. The impact of a TBI on QoL could be positive or negative. Post-injury changes in ability were not always attributed to the injury, but rather to a sense of normal age-related changes as identified by the adolescent. Changes as a result of the injury were not always considered important to the adolescent’s view on QoL. Adolescents identified social and inter-personal discrepancies and the emotional consequences of these discrepancies. Ultimately, the individual’s appraisal of their identity from pre to post injury life related to their current sense of well-being. Friendships were very important considerations for post-injury well-being. Processes of post-traumatic growth were identified in the adolescent narrative. The findings of this study are novel and have important implications for both research study design and clinical care settings involving adolescent survivors of a TBI