OBJECTIVES: To investigate if and how the impact of grief and bereavement on caregivers has been captured in National Institute for Health and Care Excellence (NICE) Highly Specialised Technology (HST) appraisals.

METHODS: Completed and ongoing NICE HST appraisals with documents from at least one committee meeting were reviewed to identify appraisals that included considerations of bereavement. Data were collected on the clinical area, methods of capturing impact of bereavement, and the impact on the incremental cost-effectiveness ratio (ICER).

RESULTS: Eight of 23 HST appraisals included considerations of bereavement; three covered clinical areas associated with childhood mortality, three with adult mortality and two with both childhood and adult mortality. Only two appraisals quantified the carer disutility due to bereavement in scenario analyses in the economic model: one (HST7) modelled family QALY loss resulting in an ICER decrease by 9%; another (ID800) included a carer utility decrement corresponding to the most severe patient health state that was modelled beyond the patient’s lifetime, however the impact on the ICER was not available. No comments on these approaches were reported by the Evidence Review Group. The committee did not agree with the approach in HST7.

The impact of bereavement was discussed in three company submissions without formally including it in the economic model and in the patient group submissions or patient expert statements in six of eight appraisals. These highlighted the multiple losses experienced by families and the anticipatory grief surrounding the potential loss of a family member.

CONCLUSIONS: The importance of bereavement in rare diseases was reflected by its inclusion in over 30% of HST appraisals. However, methodological challenges exist for capturing the impact of bereavement and anticipatory grief on caregivers. Further research is required to enable full consideration of the impact of premature death of patients with rare conditions on caregivers.