ISSUE: While it’s clear that family members can be profoundly affected by the ill health of a child, how to capture family member spillover health effects in pediatric economic evaluation is fraught with controversy. In the case of life-extending interventions, the “Carer-QALY trap” suggests that whereas small quality-adjusted life year (QALY) gains may be experienced by the patient, the extensive QALY losses experienced by family members due to prolonged caregiving may paradoxically make treatment appear less favourable than death. Inclusion of caregiving effects is also subject to bias associated with the number of caregivers available, with treatments demonstrating better outcomes in families with larger caregiving circles. The inclusion of family member spillover health effects is increasing, but a wide range of study designs, preference-based health-related quality-of-life instruments and modeling approaches are being used, revealing a lack of consensus on the optimal design, tool and modelling approach. This international panel will examine and debate different approaches to capturing family member/caregiver health effects in pediatric economic evaluation.

OVERVIEW: Mick Tilford will moderate and provide context. Ramesh Lamsal will address the appropriateness of including spillover health effects and will contrast the different approaches used, such as measuring parent and child health state utilities in a single or separate models, deriving joint health states, summing QALY gains across family members, or deriving a household/family utility function. Wendy Ungar will illustrate the issue using economic evaluation of pediatric genetic testing, where testing is often directed at families (through cascade testing or trio sequencing), and present how family member health effects and resource use can be included in the reference case analysis. After the presentations, the moderator will pose questions to panelists to spark debate and each speaker will be asked to suggest ways forward. The session will end with an audience Q&A.