ISSUE: It is clear that some diseases significantly affect more than just the patients and may have profound effects on carers and other family members. This is particularly the case for familial carers of people with life limiting illness, though not exclusive to them. There is no consensus on whether HTA should seek to incorporate these carer effects or, if so, how. HTA bodies take different perspectives on measuring carer QoL and burden. There are significant challenges in measuring carer QoL in life limiting progressive conditions and disagreement on whether such measures should be routinely included, particularly for life transforming treatments that can change the course of disease progression.

OVERVIEW: The panel will discuss whether there is any case to include wider carer considerations in HTA and, if they are included, the appropriate ways in which it might be done. Ron Akehurst, will moderate the session and pose questions to the panel.

• Can standard methodologies preferred by HTA bodies for assessing effects on patients adequately capture the burden on carers? Can we reflect what is most important to carers?
• Can we account for the inevitable adjustments made by carers over a lifetime?
• Should we seek to incorporate anticipatory grief, the value of hope for untreatable life limiting conditions and the long term impact of bereavement?

The panellists will represent different stakeholder and geographical perspectives. Fleur Chandler will present a carer perspective arguing for more pragmatic and sensitive approaches to measuring QoL in those caring for people with lifelong progressive and life limiting conditions and recommend greater collaboration between patient groups, academics, manufacturers and agencies. Jill Carlton, an academic researching carer HRQoL and burden, will argue that current approaches do not always capture what is important to carers. Peter Neumann will show how the approach reflected in the ISPOR "Value Flower" has relevance.