CMV Action assisted in this study which was carried out by researchers from the University of Southampton. It has now been completed and the results have been published in Archives of Disease in Childhood, an academic journal. The objective of the study was to describe the health-related quality of life of children with congenital CMV (cCMV) and that of their parents. Before this study, no published studies had looked at the quality of life of children with congenital CMV in the UK.
The study recruited families with children who had cCMV through CMV Action (so we say thank you to all those families who kindly assisted). Parents completed questionnaires about their child’s quality of life and questionnaires about their own quality of life. Children who were able to answer questions themselves completed questionnaires about their own quality of life. The questionnaire responses were scored to give overall scores for different aspects of quality of life. The scores of children with congenital CMV were compared to previously published scores of children from the UK population. Seventy families participated, with children aged between 5 months & 18 years. The results showed that children whose health has been affected by cCMV had poorer quality of life than children who have not been affected by congenital CMV. It was found that the greater the effect of congenital CMV on a child’s health, the poorer the child’s quality of life. The results also showed that parents of children whose health was moderately or severely affected by cCMV had poorer quality of life & poorer physical, emotional, social, & cognitive functioning than parents of less severely affected children.
The study concluded that cCMV has a significant effect on the quality of life of children with congenital CMV & also their parents. The results of this study will be used to understand the costs of congenital CMV, & inform resource allocation and underline the importance of, further research into potential interventions to prevent & treat cCMV.