Economic Burden of Congenital Cytomegalovirus Disease on Families in the United States.

Objective: The objective of this study was to assess the economic family spillover effects of childhood congenital cytomegalovirus (cCMV) in the US. Methods: This cross-sectional, Web-based study collected economic and health-state utility data between August 2024 and April 2025 using three surveys targeting caregivers of children with cCMV, children with cCMV, and their siblings. Results: Respondents included 227 caregivers, 211 children with cCMV, and 173 siblings. A high economic burden on families of children with cCMV was reported, including total mean annual costs (out-of-pocket medical and personal care expenses and work- or productivity-related costs) of $83,140 and lifetime out-of-pocket home adaptation/specialized schooling costs of $4713. The mean caregiver EQ-5D-5L utility score was 0.86, which is comparable to US general-population norms. Mean Health Utilities Indexes Mark 2 and 3 scores varied within the ranges of 0.38-0.83 and 0.03-0.73, respectively, among children with cCMV. Adult siblings reported a mean EQ-5D-5L utility of 0.90. Siblings aged 4-7 and 8-17 years reported mean EQ-5D-Y-3L utilities of 0.90 and 0.92, respectively. Conclusions: This is the first study to report the family spillover effects of caring for children with cCMV in the US. The results confirm a considerable, multifaceted burden experienced by children with cCMV and their families, spanning health-state utility and economic strains.