PURPOSE

: Informal carers’ burden is disproportionately high in some diseases. The inclusion of carer utilities in CUAs in these cases seem justified, however there are questions and uncertainties around their measurement, interpretation, and method of incorporation into the evaluation.

DESCRIPTION

: Noemi Muszbek will introduce the importance of carers in disease management, the current use of carer utilities in CUAs and implications for health technology assessments (HTAs). The various barriers to their use and the uncertainties in measurement, interpretation and inclusion will be outlined (8 minutes). Hareth Al-Janabi will discuss indirect elicitation methods, including the potential issues with validity and responsiveness of various preference-based quality of life measures in informal care and will compare the relative performance, potential value, and limitations of carer specific vs. generic instruments for HTAs using the example of four highly prevalent conditions (12 minutes). Andrew Lloyd will describe the elicitation of carer utilities with vignette studies in contrast to generic measures, considering their potential pitfalls and discussing recent examples. Vignettes studies also provide the opportunity to elicit post-death values, however their interpretation and significance can raise additional questions (12 minutes). Lastly, Edit Remak will discuss the ethical and methodological issues around the implementation of carer utilities, including the use of post-death values and the risks of conferring survival benefit to the carers from patients. A conservative method of implementation will be offered using an oncology example (12 minutes).

The workshop will use real-time polling on the experience of audience members in the use of carer utilities, and the challenges and opportunities they see before and after the presentation. They will be invited to discuss the inclusion of carer utilities in CUAs, their implications for HTAs regarding the definition of value and the current thresholds, the suitability of methods and their impact on uncertainty.