OBJECTIVES: The latest National Institute for Health and Care Excellence (NICE) health technology assessment (HTA) methods permit the inclusion of caregiver disutility data, where appropriate, in technology appraisals. In the context of rare diseases, the impact on the health-related quality of life of a patients’ parents, partner, and other family members can be substantial. This research reviewed how carer disutility and the number of impacted carers have been considered within previous NICE highly specialised technology (HST) appraisals.

METHODS: NICE HST appraisals published until June 2022 were reviewed and those where caregiver disutility was contained within the submission were included. Information extracted included the number of caregivers incorporated into the economic model (reported here) as well as: disutility value(s) applied, source of data, and the NICE critique of the methods used.

RESULTS:

CONCLUSIONS: This initial research demonstrates variability in practice and uncertainty around best practice for incorporating carer disutility into cost-effectiveness analyses of new treatments for rare diseases appraised in NICE HST appraisals. Future appraisals would benefit from a focus on the best methods to implement when considering informal carer disutility data, and learnings from previous HTAs will likely help to inform this.