ISSUE:

Health Technology Assessment (HTA) bodies may consider health-related quality of life (HRQoL) effects to caregivers and family members (caregivers), but guidance is mixed as to whether this should be limited to the patient’s lifetime, or whether the effect of bereavement on caregivers’ HRQoL should be included. Limiting cost-effectiveness analyses (CEAs) to the patient lifetime treats the death of the patient as a ‘utility improving event’ for caregivers. Intuitively, this seems a perverse view of the effect of the death of a loved one on families and contradicts the widely accepted belief that grief affects wellbeing.

However, there is currently little evidence available on how bereavement affects HRQoL, and many questions remain: Do HRQoL instruments detect the bereavement effect? Is it big enough to warrant its inclusion in CEA? Is it the same for all populations? How could bereavement be included in HTA? Would bereavement make any difference to HTA decisions?

OVERVIEW:

The session will begin and end with a poll. Chris Skedgel will discuss the rationale for including the bereavement effect on caregiver HRQoL when conducting CEAs (5 minutes). Tara Lavelle will present quantitative and qualitative evidence from bereaved parents of children with spinal muscular atrophy in the US to support the view that the bereavement effect is relevant when evaluating life-extending treatments (12 minutes). Becky Pennington will argue that the bereavement effect is short-lived and consistent across populations, using longitudinal UK survey data (12 minutes). Saskia Knies will provide an HTA perspective, reflecting on some of the issues decision-makers may face in determining whether and how bereavement effects should be included (12 minutes). The moderator will oversee a debate between panellists and welcome questions from the audience (15 minutes).

Attendees including health economists, policy makers and outcomes researchers will enjoy the lively discussion on this controversial topic.