OBJECTIVES : Quality-of-life (QoL) is measured using health-state-utility-valuations (HSUV) in cost-utility analyses. However, people with inherited and long-term health conditions such as haemophilia may adapt to their given health state. Therefore, our study aims to compare the preferences of people with haemophilia (PwH) and the general population (GP) for the EuroQoL 5-Dimension 5-Level instrument (EQ-5D-5L) attributes and levels.

METHODS : Between July and September 2019, a representative sample of the GP (n = 1,900) and PWH (n = 283) in the US participated in a discrete choice experiment which included a time trade-off duration attribute (DCE_TTO). Respondents were presented with pairs of EQ-5D-5L health states with an associated duration, and asked to choose which they preferred. A total of 120 DCE_TTO tasks were administered online, with each participant completing 15. Dominated and repeated scenarios were included to test for inconsistencies in responses. Random sampling of gender and age was undertaken to rebalance the comparison and data were modelled using conditional-logit regressions. Scale testing was undertaken to assess differences in preferences between PwH and the GP. Regression coefficients were compared and a haemophilia-specific value set was developed.

RESULTS : The haemophilia-specific preferences that were elicited revealed a smaller decrement in utility associated with mobility, self-care and usual activities, and a similar decrement in pain/discomfort and anxiety/depression in PwH compared with the GP. These results indicate that PWH tend to provide higher values for EQ-5D-5L health states compared to the GP (mean difference 0.17).

CONCLUSIONS : This study compares the preferences of PWH and the general population for EQ-5D-5L attributes and levels. The current findings highlight the unmet medical need in haemophilia, as PWH report higher values for health states and thus the impact of haemophilia may be underestimated. This haemophilia-specific EQ-5D-5L value set could be used to inform economic evaluations alongside GP value sets.