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Paediatric health-related quality of life in congenital cytomegalovirus
  1. Kate Monica Isabel Ralph1,
  2. Kim Bull1,
  3. Caroline Trotter2,
  4. Sharon Wood3,
  5. Christine E Jones4,5
  1. 1Faculty of Medicine, University of Southampton, Southampton, UK
  2. 2Department of Veterinary Medicine, University of Cambridge, Cambridge, UK
  3. 3CMV Action, London, UK
  4. 4Clinical and Experimental Sciences, Faculty of Medicine, University of Southampton, Southampton, UK
  5. 5NIHR Southampton Clinical Research Facility and Biomedical Research Centre, University Hospital Southampton NHS Foundation Trust, Southampton, UK
  1. Correspondence to Ms Kate Monica Isabel Ralph, Faculty of Medicine, University of Southampton Faculty of Medicine, Southampton, Hampshire, UK; kmir1g17{at}soton.ac.uk

Abstract

Objective Congenital cytomegalovirus (cCMV) is the most common congenital infection globally. 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 were 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 with 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 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 lowest HRQoL compared with 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.

  • Child Health
  • Infectious Disease Medicine
  • Paediatrics
  • Communicable Diseases

Data availability statement

Data are available on reasonable request. Individual participant questionnaire data will be made available on appropriate request.

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Data availability statement

Data are available on reasonable request. Individual participant questionnaire data will be made available on appropriate request.

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Footnotes

  • Contributors KMIR, CEJ and KB developed the idea and designed the study. CT and SW contributed to the design of the study. KMIR carried out data collection. KMIR and CEJ verified the data. KMIR performed the data cleaning, data analyses and data interpretation. KMIR drafted the first version of the manuscript and prepared the tables and figures. KMIR is the guarantor for this study.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests CEJ runs clinical trials of vaccines in pregnancy funded by vaccine manufactures; all funding is paid to her institution. She has received payment from Pfizer, MSD and Sanofi Pasteur for consultancy or advisory boards related to vaccination in pregnancy.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.