OBJECTIVES:

Including health outcomes for carers – in addition to patient outcomes – in economic evaluations can change the findings of the analysis. Whilst in many disease areas there can be clear justification for including carers’ health-related quality of life (HRQL) in health technology assessments (HTA), this is done infrequently and inconsistently. We were interested in the extent, and methods, by which HTA bodies include carers’ HRQL in economic evaluations.

METHODS:

We reviewed methods guides, from 13 HTA bodies for direction regarding carers’ HRQL and selected five interventions as case studies. For each case study, we extracted information on whether carers’ HRQL was included by the manufacturers and/or assessors. We reviewed the methods used, and the impact on the results (where public).

RESULTS:

Of the 13 HTA methods guides; two recommend including carers’ HRQL in the base case, two referred to outcomes for ‘all individuals’, two preferred to exclude carers, three said it depended on other conditions, and guidance was unclear in the remaining four. Across the five case studies: five source studies for carers’ HRQL and two different modelling approaches were used. Across 23 analyses, including carers’ HRQL increased incremental quality adjusted life years (QALYs) in 19, and decreased it in two; the magnitude of change varied substantially.

CONCLUSIONS:

We recommend that if included: 1) clear justification of carers quality of life is needed, 2) use HRQL data from the population under comparison (where possible), 3) data from another disease area(s) or country(ies) is clearly justified (and transferability/applicability issues are addressed), 4) limitations of cross-sectional data (a widely used source) are acknowledged, 5) assumptions and implications of the modelling approach are explicit, and 6) disaggregated results for patients and carers are presented.