Measurement framework and approaches for different age ranges and conditions in pediatric populations

From childhood to adolescence, every child experiences changes in their roles and responsibilities and this in turn, changes the perceptions of their own functioning. This developmental change can affect the weight of the domains that make up the construct measured, or interpretation of the construct measured.

During the second session of the 2022 Measuring What Matters Symposium, speakers will discuss measurement frameworks, response shift and factors associated with measuring/collecting QOL/HRQL in pediatric population.

Session Speakers:

Naomi Knoble, PhD

U.S. Food and Drug Administration 

Naomi Knoble, PhD, is a reviewer in the Division of Clinical Outcome Assessment (DCOA) at FDA. Prior to joining FDA, Dr. Knoble was a research scientist and global healthcare consultant specializing in patient-centered outcomes and measurement. She is also a psychologist specializing in pediatric neuropsychology. Her research focuses on pediatric rare disease clinical trial measurement.

Nikki Ow, PhD

The University of British Columbia

Nikki Ow is currently a Postdoctoral Fellow at the University of British Columbia in Canada. She graduated from McGill University where she was involved in work related to pediatric rare diseases, patient engagement, and response shift. Her current work involves research in youth mental health services, mental health outcomes, and the relationship between social media and youth mental health. Nikki is also a pediatric occupational therapist who has worked with children and adolescents with developmental disabilities.

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 (, 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.

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.