Melanoma Compromises Quality of Life, especially in Later Stages

MedicalResearch.com Interview with:

Eugene R. Semenov, MD, MA Washington University School of Medicine

Dr. Semenov

Eugene R. Semenov, MD, MA
Washington University School of Medicine

MedicalResearch.com: What is the background for this study?

Response: Melanoma is an aggressive type of skin cancer which has traditionally carried a poor prognosis. Over the past decade, many new therapies have become available that have improved long-term survival rates in patients with metastatic melanoma. However, these drugs have been associated with serious side effects, such as pancreatitis and hepatitis. Our goal was to study how melanoma diagnosis, disease stage, and treatment status impact patient quality of life (QoL).

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Adolescent vs Parental Measurement of Quality of Life After Traumatic Brain Injury May Differ

Ashley Di Battista, Ph.D. Research Fellow Critical Care Medicine| Neurosciences & Mental Health Program The Hospital for Sick Children  Toronto, ON, CanadaMedicalResearch.com Interview with:
Ashley Di Battista, Ph.D.
Research Fellow
Critical Care Medicine| Neurosciences & Mental Health Program
The Hospital for Sick Children  Toronto, ON, Canada

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 .

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