Medical Research: What is the background for this study? What are the main findings?
Dr. Di Battista: Most of what is known about adolescent quality of life (QoL) after traumatic brain injury (TBI) doesn’t come from adolescents – it comes from their parents. This profoundly non- concordant data (known as the “Proxy Problem”) is drawn from parent reported health-related quality of life (HRQoL) questionnaires (e.g. the PedsQL ™). Parent report can be influenced by the parents’ own distress after their child’s traumatic brain injury – which results in parents providing poorer estimates of their child’s QoL. Lack of insight is often purported to explain this difference, in the absence of direct examination of insight, or subsequent data, to support this claim. HRQoL has been criticized in the broader wellbeing literature as incompatible with the QoL construct– due to the absence of core features of the overall QoL model, and an inherent suggestion that a lack of overt pathology is equivalent to a good outcome.
Proxy reported, HRQoL focused research has generated a polarized view of quality of life after pediatric traumatic brain injury. This misrepresentation is due in part to the way in which we acquire this data (e.g. the tools) and who we ask (e.g. parents). The current study explored the individual adolescent experience of quality of life after traumatic brain injury and whether the tools commonly used to assess quality of life after brain injury are of capturing what adolescents define as relevant to their definition of quality of life.
Our findings revealed that when adolescents did endorse changes in functioning on the PedsQL, they did not consider these changes to be relevant to, or impact on, their self-described QoL. While the PedsQL™ is capable of documenting changes post-injury, it does not seem to capture domains of relevance to the adolescent idea of QoL. The ability of these adolescents to reflect on their own circumstances, engage in pre-to-post injury analysis of their functioning challenges default positioning that lack of insight is the sole determinant for differences in reports between proxies and adolescents on quality of life .
Medical Research: What should clinicians and patients take away from your report?
Dr. Di Battista: Adolescents know what matters to them – and this may not be what clinicians, or their tools, expect. The simple act of asking the adolescent how they are feeling and what matters to them – may be the most important step in identifying areas of relevance to adolescent quality of life post-injury. This person-centered focus can serve to target meaningful interventions for adolescents as well guide the clinical and rehabilitative context.
Medical Research: What recommendations do you have for future research as a result of this study?
Dr. Di Battista:: Future research should continue to provide adolescents’ with the opportunity to describe their own quality of life and to ask what is and is not relevant to life post-injury. Future studies may also wish to assess the parental decision-making process, as it applies to how they quantify their adolescents’ quality of life . This could provide information capable of disentangling confounding factors (e.g. parent mood, distress) and how these impact on parent responses to their adolescent’s quality of life functioning after traumatic brain injury.
Brain Inj. 2015 Feb 2:1-10. [Epub ahead of print]
MedicalResearch.com Interview with: Ashley Di Battista, Ph.D. (2015). Adolescent vs Parental Measurement of Quality of Life After Traumatic Brain Injury May Differ MedicalResearch.com