Caregiver-reported Family Impact of Congenital Cytomegalovirus Across Early and Middle Childhood

OBJECTIVES: To examine caregiver-reported family impact of congenital cytomegalovirus (cCMV). METHODS: Caregivers of children with cCMV recruited by social media and nonprofit channels stratified by age: toddlers aged 1 to <4 years and school-aged children aged ≥4 to <11 years, completed online questionnaires. Outcomes among toddlers were assessed using the Infant Toddler Quality of Life Questionnaire and school-aged children using the Child Health Questionnaire. Multivariable linear regression models were specified a priori using a block-wise approach, with early-life clinical characteristics, followed by current medical and neurodevelopmental conditions. Standardized beta coefficients were used to compare effect sizes. RESULTS: Of the children with cCMV (N = 181), early-life clinical characteristics were not independently associated with caregiver-reported outcomes after adjustment for current morbidity. Among toddlers, seizure disorder and cerebral palsy were most strongly associated with greater caregiver time burden, whereas autism and seizures were most strongly associated with more negative caregiver emotional impact. Among school-aged children, seizure disorder was strongly associated with greater caregiver time burden and reduced family activities, and both seizure disorder and autism were associated with a less negative caregiver emotional impact. Family cohesion was not independently associated with clinical characteristics in either age group. CONCLUSION: Caregiver-reported family impact outcomes in cCMV are driven more by current functional morbidity than by markers of disease severity at birth. Distinct, domain-specific patterns emerged across developmental stages, underscoring the importance of ongoing functional assessment and family-centered support for children with cCMV and their families.