Developing Preference-Based Health-Related Quality-of-Life Instruments for Young Children and Infants: What’s the Best Way to Proceed?


Moderator: Scott D Grosse, PhD, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, GA, USA
Panelists: Tara Lavelle, PhD, Tufts University School of Medicine and Tufts Medical Center, Boston, MA, USA; Kim Dalziel, PhD, Professor and Head, Health Economics Unit, Centre for Health Policy, The University of Melbourne, Carlton, VIC, Australia; Wendy J Ungar, MSc, PhD, Child Health Evaluative Sciences, The Hospital for Sick Children Research Institute, Toronto, ON, Canada

ISSUE: The value of the universal quality-adjusted life year (QALY) has long been recognized, but cost-utility analysts face significant challenges in measuring and valuing utility in children. These include an inability to directly elicit utilities, reliance on proxies, disagreement regarding whether a child or adult perspective or preference is most relevant for valuing child health, and a lack of preference-based health-related quality of life (HRQoL) measures specifically for young children and infants. This international panel will examine and debate different approaches to measuring and valuing health in very young children and infants.

OVERVIEW: Scott Grosse will moderate and provide historical context. Tara Lavelle will share findings on using a visual analog scale to capture infant utility and how parents’ perspectives affected reporting. Kim Dalziel will present the comparative psychometric performance of the EQ-5D-Y, adapted from the adult EQ-5D, and the PedsQL in preschool children, and will describe work to develop the EQ-TIPs for infants. Wendy Ungar will discuss qualitative research identifying attributes relevant to infant HRQoL and alternative approaches. Those include restructuring and adding new attributes to existing adult tools (HUI -> HuPS), mapping non-preference-based but age-appropriate child HRQoL instruments to derive utility weights (PedsQL ->PedUtil), and developing child-centric preference-based tools (e.g., CHU-9D) and expanding their use to younger children. There is an inherent tension between conserving attributes and levels used in adult tools versus developing ones more reflective of infant or young child HRQoL. While the former enables easier pooling of data across pediatric and adult age groups for lifetime modeling, it may lack construct validity in young children. After the presentations, the moderator will pose questions to panelists on measurement and valuation challenges to spark debate and each speaker will be asked to suggest ways forward. The session will end with an audience Q&A.

Conference/Value in Health Info

2024-05, ISPOR 2024, Atlanta, GA, USA




Patient-Centered Research

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