Background

Congenital cytomegalovirus (cCMV) is the most common congenital infection globally. Around 25% of infants with cCMV develop permanent sequelae.

Aims

This cross-sectional study aimed to describe the health-related quality of life (HRQoL) of children with cCMV and that of their parents.

Methods

Families of children with cCMV in the UK were approached through the charity CMV Action. Parents completed questionnaires about their own HRQoL and that of their child. Children who were able to self-report completed questionnaires about their own HRQoL.

Demographic characteristics of the sample were described using descriptive statistics. Questionnaire responses were scored, and domain and summary scores calculated and compared with UK population norms, where available.

Results

Seventy families participated, with children aged between 5 months and 18 years. Children with cCMV had poorer HRQoL compared to children from UK population data. HRQoL of children whose health was more severely affected by cCMV was poorer than that of children whose health was less severely affected.

Parents of children whose health was moderately or severely affected by cCMV had greater psychological morbidity and poorer HRQoL in Physical, Emotional, Social, and Cognitive Functioning domains than parents of less severely affected children.

Conclusions

cCMV has a significant effect on the HRQoL of children with cCMV and their parents, with the children with the most significant health needs having the poorest HRQoL compared to those children with little or no effects on their health. This data could contribute to health economic analyses, informing resource allocation to potential interventions for the prevention and treatment of cCMV.