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

Abstract

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.

• Adolescents/youth
• mixed methods
• quality-of-life
• traumatic brain injury

Acknowledgements

The authors acknowledge: Victorian Government Operational Infrastructure Scheme; Victorian Neurotrauma Initiative—fellowship to CS; Australian National Health & Medical Research Council—fellowships to VA and CC; and Canadian Institutes of Health Research—Doctoral Research Award to AD.

Declaration of interest

This research was supported in part by grants from the Canadian Institutes of Health Research (CIHR) Doctoral Research Award (DRA), Canada—awarded to Ashley Di Battista, and the Victorian Government Operations Infrastructure Funding, Australia. There authors report no conflicts of interest.