Paediatric quality of life in congenital cmv: current knowledge and future directions
Paediatric quality of life in congenital cmv: current knowledge and future directions
Background: congenital cytomegalovirus (cCMV) is the most common congenital infection. Around 25% of infants with cCMV develop permanent sequelae. However, there is a paucity of research evaluating the quality of life of children with cCMV.
Objectives: this study evaluates current evidence regarding long-term effects of cCMV on affected children, and considers methodology used in quality of life studies that could be applied to cCMV and possible impacts on updated health economic evaluations of cCMV.
Methods: we reviewed studies that reported long-term effects of cCMV on affected children, studies that measured quality of life in children with cCMV and similar paediatric populations, and studies that reported psychometric properties of quality of life measures.
Results: the high prevalence of long-term sequelae amongst children with cCMV is likely to significantly impact quality of life of affected children and their families. Only one existing study assessed quality of life in children with cCMV and their parents, which was subject to bias and only incorporated one quality of life measure. We identified multiple quality of life measures that could be suitable for use in future studies of quality of life in cCMV, with varying psychometric properties and assessing different constructs.
Conclusions: further research evaluating quality of life in cCMV is needed. To assess quality of life in cCMV, quality of life measures should be selected based on their relevance to sequelae of cCMV (for example, inclusion of a hearing-specific measure to assess the effect of sensorineural hearing loss), but generic quality of life measures are also important for comparison to the general population. Researchers should consider the importance of spillover effects on quality of life of family members as well as effects on the child’s own quality of life. A national multi-informant cross-sectional questionnaire-based study in the UK is being undertaken, aiming to describe quality of life of children with cCMV and their families. Quality of life data could be used to inform health economic analyses and decision-making regarding cost-effectiveness of interventions for cCMV prevention and treatment.
262-263
Ralph, Kate
966c2169-bad3-435f-9999-69ac677341f9
Bull, Kim
751f8b25-29ba-4d4f-96e2-6c339a83a47f
Jones, Christine E.
48229079-8b58-4dcb-8374-d9481fe7b426
October 2021
Ralph, Kate
966c2169-bad3-435f-9999-69ac677341f9
Bull, Kim
751f8b25-29ba-4d4f-96e2-6c339a83a47f
Jones, Christine E.
48229079-8b58-4dcb-8374-d9481fe7b426
Ralph, Kate, Bull, Kim and Jones, Christine E.
(2021)
Paediatric quality of life in congenital cmv: current knowledge and future directions.
Archives of Disease in Childhood, 106 (Suppl 1), .
(doi:10.1136/archdischild-2021-rcpch.457).
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Meeting abstract
Abstract
Background: congenital cytomegalovirus (cCMV) is the most common congenital infection. Around 25% of infants with cCMV develop permanent sequelae. However, there is a paucity of research evaluating the quality of life of children with cCMV.
Objectives: this study evaluates current evidence regarding long-term effects of cCMV on affected children, and considers methodology used in quality of life studies that could be applied to cCMV and possible impacts on updated health economic evaluations of cCMV.
Methods: we reviewed studies that reported long-term effects of cCMV on affected children, studies that measured quality of life in children with cCMV and similar paediatric populations, and studies that reported psychometric properties of quality of life measures.
Results: the high prevalence of long-term sequelae amongst children with cCMV is likely to significantly impact quality of life of affected children and their families. Only one existing study assessed quality of life in children with cCMV and their parents, which was subject to bias and only incorporated one quality of life measure. We identified multiple quality of life measures that could be suitable for use in future studies of quality of life in cCMV, with varying psychometric properties and assessing different constructs.
Conclusions: further research evaluating quality of life in cCMV is needed. To assess quality of life in cCMV, quality of life measures should be selected based on their relevance to sequelae of cCMV (for example, inclusion of a hearing-specific measure to assess the effect of sensorineural hearing loss), but generic quality of life measures are also important for comparison to the general population. Researchers should consider the importance of spillover effects on quality of life of family members as well as effects on the child’s own quality of life. A national multi-informant cross-sectional questionnaire-based study in the UK is being undertaken, aiming to describe quality of life of children with cCMV and their families. Quality of life data could be used to inform health economic analyses and decision-making regarding cost-effectiveness of interventions for cCMV prevention and treatment.
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Published date: October 2021
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Local EPrints ID: 456924
URI: http://eprints.soton.ac.uk/id/eprint/456924
ISSN: 0003-9888
PURE UUID: bc8482f4-2e80-4046-adaa-73b803f424ae
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Date deposited: 17 May 2022 16:47
Last modified: 17 Mar 2024 03:45
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Author:
Kate Ralph
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