Are Existing Measurement Tools Accurately Measuring Health-Related Quality of Life of Informal Caregivers?

ISSUE: As demands upon healthcare resources increase, informal caregiving has gained greater consideration in determining the impact of health conditions. However, not all informal caregiving is the same. Variation exists within and across health conditions. Three key areas of debate will be discussed. 1) conceptualizing informal caregiver HRQoL for use within economic models. 2) measurement of informal caregiver HRQoL. 3) valuation and incorporation of informal caregiver HRQoL in economic evaluations. This session will reflect upon lived experiences of being an informal caregiver of a person with a rare, progressive life-limiting condition, explore the differences of informal caregiving across the different groups, and consider how to account for these differences when selecting measures and creating economic models to ensure the correct values are captured, and reflect upon whether values attributed to informal caregiving should be the same across health conditions.

OVERVIEW: Fleur Chandler will first offer an overview of the lived experience and variability of being a caregiver (15 minutes), reflecting upon key domains of HRQoL affected. Jill Carlton will discuss the suitability of existing instruments to measure informal caregiver HRQoL, focusing upon content validity and acceptability. She will reflect upon whether societal views of informal caregiver HRQoL impact should differ according to issues such as rare conditions, and/or life-limiting conditions. Alice Biggane will discuss the need for wider conversation and collaboration between sponsors and payers to ensure alignment on how to capture caregiver HRQoL and the impact of potential treatments in health technology assessments and cost-effectiveness analyses, without leaving value behind (10 minutes). Alice Biggane, Jill Carlton and Fleur Chandler will be giving their thoughts on these areas from the different perspectives; industry, academia and from lived experience during a panel discussion lead by Sally Vincent. Sally will also facilitate questions from the audience (20 minutes).