Measuring What Matters 2022

6 Presentations 0 Sections

Measuring What Matters in Child Health: Challenges, Developments and Opportunities

There are many challenges that arise in the use of patient-reported outcome measures (PROMs) in pediatric populations. These include age and developmental differences, response shift associated with developmental changes and illness trajectories, identifying the best informant(s) (the child, a parent/caregiver, healthcare professional), and understanding what concepts are important to children and at what age they can reliably self-report. The aim of this symposium is to provide a forum to share and debate current conceptualizations of quality of life in children, methodological and operational challenges commonly encountered in measurement and best practice methods for addressing these.

Symposium Committee Co-Chairs

Nalin Payakachat, BPharm MS PhD
Eli Lilly and Company
United States

Rob Arbuckle, MSc
Adelphi Values Patient-Centered Outcomes
United Kingdom

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$150.00 - $350.00

Items Included in the Purchase of this Event

Session 1: Does one size actually fit all? Conceptual fuzziness of QoL/HRQoL/functioning in pediatrics

Presentation: Bryce Reeve, PhD, Duke University School of Medicine, Durham, North Carolina, United States, Christopher Forrest, MD PhD, Children’s Hospital of Philadelphia, Pennsylvania, United States, 69 min 0 sec

Session 2: Measurement framework and approaches for different age ranges and conditions in pediatric populations

Presentation: Christopher Forrest, MD PhD, Children’s Hospital of Philadelphia, Pennsylvania, United States, Naomi Knoble, PhD, U.S. Food and Drug Administration, Washington, District Of Columbia, United States, Nikki Ow, PhD, The University of British Columbia, Vancouver, British Columbia, Canada, 61 min 52 sec

Session 3: How to meaningfully discuss meaningful change with children: Qualitative approaches

Presentation: Hannah Staunton, MSc, Roche Products Ltd, Welwyn Garden City, United Kingdom, Claire Burbridge, MSc, Clinical Outcomes Solutions, Folkestone, United Kingdom, 66 min 51 sec

Session 4: Per aspera ad astra: Advancement in measuring child health

Presentation: Aaron Kaat, PhD, Northwestern University, Chicago, Illinois, United States, Holger Muehlan, PhD, University of Greifswald, Greifswald, Germany, 67 min 18 sec

Session 5: Why is it so challenging to measure preference-based HRQoL in children? Potential measurement problems and challenges

Presentation: J Mick Tilford, PhD, Department of Health Policy and Management, Little Rock, Arkansas, United States, Wendy Ungar, MSc PhD, The Hospital for Sick Children Research Institute, Toronto, Ontario, Canada, Lisa Prosser, PhD, University of Michigan – Susan B. Meister Child Health Evaluation and Research Center, Ann Arbor, Michigan, United States, 61 min 41 sec

Session 6: Stronger together: Patient engagement and integration of PROs in pediatric clinical practice and research prioritization

Presentation: Maria Santana, PhD, Cumming School of Medicine, University of Calgary, Calgary, Alberta, Canada, Lotte Haverman, PhD, Emma Children’s Hospital, Amsterdam UMC, Amsterdam, Netherlands, 64 min 50 sec