Measuring EQ-5D-5L utility values in parents who have experienced perinatal death

Background: Policymakers use clinical and cost-effectiveness evidence to support decisions about health service commissioning. In England, the National Institute for Health and Care Excellence (NICE) recommend that in cost-effectiveness analyses “effectiveness” is measured as quality-adjusted life years (QALYs), derived from health utility values. The impact of perinatal death (stillbirth/neonatal death) on parents’ health utility is currently unknown. This knowledge would improve the robustness of cost-effectiveness evidence for policymakers. Objective: This study aimed to estimate the impact of perinatal death on parents’ health utility. Methods: An online survey conducted with mothers and fathers in England who experienced a perinatal death. Participants reported how long ago their baby died and whether they/their partner subsequently became pregnant again. They were asked to rate their health on the EQ-5D-5L instrument (generic health measure). EQ-5D-5L responses were used to calculate health utility values. These were compared with age-matched values for the general population to estimate a utility shortfall (i.e. health loss) associated with perinatal death. Results: There were 256 survey respondents with a median age of 40 years (IQR 26–40). Median time since death was 27 months (IQR 8–71). The mean utility value of the sample was 0.774 (95% CI 0.752–0.796). Utility values in the sample were 13% lower than general population values (p < 0.05). Over 10 years, this equated to a loss of 1.1 QALYs. This reduction in health utility was driven by anxiety and depression. Conclusions: Perinatal death has important and long-lasting health impacts on parents. Mental health support following perinatal bereavement is especially important.