Does one size actually fit all? Conceptual fuzziness of QoL/HRQoL/functioning in pediatrics
Many health conditions in childhood affect children from birth through to adulthood, impacting their quality of life (QOL). Any definition of QOL for children must include the family context and developmental, environmental and societal factors associated with growing up with a health condition. Some theoretical models have been developed to understand QOL, but they were not developed specifically for the pediatric population. For QOL to be accurately measured in children, pediatric QOL must first be conceptualized.
In this first session of the 2022 Measuring What Matters Symposium, speakers will discuss current theoretical models of QOL and health related quality of life (HRQL) in children, the theoretical challenges of measuring QOL in children and adolescents and discuss possible solutions to overcome these challenges.
Christopher Forrest, MD PhD
Children’s Hospital of Philadelphia
Dr. Forrest is a pediatrician and health services and outcomes researcher. He has developed over 50 pediatric patient-reported outcome measures, many of which are part of PROMIS, and serves as ISOQOL’s Secretary/Treasurer. Chris is a Professor of Pediatrics, the Executive Director and Founder of PEDSnet (pedsnet.org), a national pediatric learning health system, and Director of the CHOP Applied Clinical Research Center, which is the institutional home for PEDSnet. He co-edited the new Handbook of Life Course Health Development, which has been downloaded over 650,000 times from the Springer web site.
Bryce Reeve, PhD
Duke University School of Medicine
Dr. Bryce Reeve is a Professor of Population Health Sciences and Pediatrics at Duke University, where he serves as Director of the Center for Health Measurement. Trained in psychometric methods, Dr. Reeve’s work focuses on assessing the impact of disease and treatments on the lives of patients and their caregivers. This includes the development of clinical outcome assessments using both qualitative and quantitative methods, and the integration of patient-centered data in research and healthcare delivery settings to inform decision-making.
Register today to attend Measuring What Matters, a symposium focused on patient-reported outcome measures (PROMs) in child health. Scheduled for 18-19 July 2022, this virtual event will consist of session presentations and live Q&As with the speakers. Recordings of the symposium will be archived for future access for registrants unable to attend the live presentations in July.
The International Society for Quality of Life Research (ISOQOL) is a global community of researchers, clinicians, health care professionals, industry professionals, consultants, and patient research partners advancing health related quality of life research (HRQL).
Together, we are creating a future in which patient perspective is integral to health research, care and policy.