Session (CTI)

PURPOSE: Patient preferences are fundamental for health economics and outcomes research. Preferences inform utility estimates for economic evaluation and are important for reflecting patient perspectives for patient-centered care. This workshop will focus on how approaches to elicit and interpret preferences from children/youths and parents can be used in decision making from a methodological perspective in health economics and outcomes research and practical perspective in clinical practice. Participants will learn good research practices for collecting, analyzing and using these preferences. DESCRIPTION: In health economics and outcomes research in childhood disease, preferences of parents and children often differ. Questions arise regarding whose preferences matter, and does the decision-making context matter? Workshop attendees will gain knowledge of good practices for stated preferences research with children/youths. Kerrie-Anne will moderate the session and introduce why it is relevant to directly capture the children’s perspectives and not just parents. Nancy will review the challenges and recommendations for valuing child and adolescent health states to derive utilities for use in economic evaluation from the recent ISPOR Task Force report. She will highlight new research underway to address how to handle differences in utilities when transitioning between child and adult HRQoL states (10 minutes). Deborah will provide an overview of stated preferences research methods in children from a systematic review and discuss the challenges of collecting patient preferences in children including ethical aspects and issues of interpretation of adult proxy responses. Drawing on case examples, she will then explore interpretation of factors important to children that differ from parents (15 minutes). Audience participation will include identifying problems and solutions for a hypothetical case study in inflammatory chronic diseases in children (20 minutes). This interactive and informative workshop will be valuable to researchers, clinicians, and industry analysts who are interested conducting patient-preference research in children/youths.