Does what we measure matter? Quality-of-life defined by adolescents with brain injury.

Objectives: To determine if domains included in popular measurement systems (e.g. the Peds QL™) reflect the adolescent survivor of a brain injury's sense of QoL and explore this relationship in reference to an emerging model of wellbeing in the adolescent with TBI. Methods: Mixed methods; adolescent QoL assessed using the PedsQL™ self-report and a semi-structured interview created by the lead author. Adolescent self-report was compared to adolescent narratives. Results: Ten adolescents participated. Adolescent PedsQL™ total was within normal limits. Adolescents reported that changes identified by the PedsQL were not important and did not impact on their sense of QoL. The importance on social components of QoL-as opposed to cognitive-provide additional support of the emerging model of wellbeing in adolescents with TBI. Conclusions: The PedsQL can identify changes post-TBI, but fails to consider whether these changes are relevant to the adolescent. Alternate methods of exploring QoL-which emphasize the interaction of social networks and friendships, should be considered to avoid an oblique view of QoL outcomes after TBI. [ABSTRACT FROM AUTHOR]