HTA are ignoring the value of reduced caregiver burden

While many health technology assessment (HTA) organizations acknowledge that many new treatments reduce the burden placed on caregivers, the value that these new treatments provide is rarely incorporated into formal cost effectiveness analyses. This is the finding from Pennington (2020) based on a review of ll published technology appraisals (TAs) and highly specialized technologies (HSTs).

Twelve of 414 TAs (3%) and 4 of 8 HSTs (50%) included carer HRQL in cost-utility analyses. Eight were for multiple sclerosis, the remainder were each in a unique disease area. Twelve of the 16 appraisals modeled carer HRQL as a function of the patient’s health state, 3 modeled carer HRQL as a function of the patient’s treatment, and 1 included family quality-adjusted life year (QALY) loss. They used 5 source studies: 2 compared carer EQ-5D scores with controls, 2 measured carer utility only (1 health utilities index and 1 EQ-5D), and 1 estimated family QALY loss from a child’s death. Two used disutility estimates not from the literature. Including carer HRQL increased the incremental QALYs and decreased incremental cost-effectiveness ratios in all cases.

Blame can be shared between both HTAs and life sciences companies. On the life sciences side, evidence on the impact on treatments on caregiver burden needs to be quantified if is to be included into technology assessments. On the HTA side, caregivers should not be ignored when measuring the value of new treatments.


Pennington BM. The Inclusion of Carer Health-Related Quality of Life in National Institute for Health and Care Excellence Appraisals. Value in Health. 2020 Aug 11.

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