Health-Related Quality of Life (HRQoL)
Prospective Assessment of HRQoL in Pediatric Patients Treated with Radiation Therapy for Brain Tumors and Non-CNS Malignancies
A collaboration of investigators at the Center for Child and Adolescent Health Policy and the Radiation Oncology Program at MassGeneral Hospital for Children, this study is focused on documenting the long-term HRQoL outcomes of patients treated with proton radiation therapy for childhood malignancies. This study documents patients’ HRQoL during treatment and for five years after treatment has ended. It is for children between 2 and 18 years of age and their parents. This research will help shed light on the positive and negative effects of treatment methods, especially proton radiotherapy, on patients’ quality of life, highlighting points of success and exposing areas in need of enhancement. We hope that such knowledge will serve to improve the experiences of pediatric cancer survivors following treatment.
Measuring Quality of Life for Adolescent and Young Adult Survivors of Central Nervous System Tumors
With rates of survival continually increasing amongst individuals treated for central nervous system (CNS) tumors, attention has turned to measuring the long-term well-being of this group, including measuring HRQoL. In this project, we seek to develop an HRQoL tool focused on adolescent and young adult survivors of CNS tumors called Health-Related Quality of Life Evaluation tool in Survivorship of CNS Tumors (QUEST CNS) using qualitative and quantitative methodologies. By developing a new targeted tool, we will better capture all of the potential long-term HRQoL issues for this population and thus help target clinical trials and clinical care to better meet the needs of survivors.
Health-Related Quality-Adjusted for Children with Autism Spectrum Disorders (ASD)
We are working to develop an ADS-Specific HRQoL assessment tool. We have assessed HRQoL among 286 children with ASD from 15 autism centers across the United States and Canada using existing generic HRQoL tools. We further conducted qualitative assessments to determine what additional aspects of HRQoL might be important to consider for children with ASD.