Research Group

Neurocognitive and Quality of Life (QoL) Working Group

It is well known that children and young adults who undergo treatment for brain tumors experience significant changes to their overall quality of life secondary to disease and treatment-related factors. These include physical, cognitive, adaptive, and social-emotional changes that can happen immediately and/or develop in significance over time. An overall goal of PNOC is to ensure that new therapeutic strategies are not only evaluated for their efficacy and ability to improve survival outcomes, but also for the impact they have on patients’ well-being and long-term functioning. To address this, the PNOC Neurocognitive and QoL working group consists of a multidisciplinary team of clinicians, including pediatric psychologists, neuropsychologists, physicians, and nurse practitioners, who are helping to develop and guide the implementation of QoL and neurocognitive data collection, and lead subsequent analysis of these outcomes in PNOC trials.

The goals of our group are to:

• Collect comprehensive outcome data regarding overall QoL and neurocognitive functioning in PNOC trials
• Understand the longitudinal impact that various therapeutic treatments have on the developing and aging brain
• In collaboration with the PNOC Health Equity Working Group, evaluate the role Social Determinants of Health (SDoH) play on patient outcomes, including patients’ overall QoL and neurocognitive functioning
• Streamline data collection to ensure appropriate representation across international PNOC sites

To join the group, please email Kimberlee Bortzk (bortzk2@chop.edu).