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.