Newcastle University

Project:

Can the KIDSCREEN questionnaire be used to measure quality of life in children born with congenital anomalies?

Project Leader(s): Professor Judith Rankin
Sponsors: NIHR NUTH FSF
Partners: Newcastle upon Tyne Hospitals NHS Foundation Trust

Congenital anomalies are a leading cause of stillbirth and infant mortality, and account for substantial continuing morbidity and disability in childhood. The life expectancy for children born with a congenital anomaly surviving beyond the first year of life has improved over time. Children born with congenital anomalies may have a range of complex health and social care needs, with cost implications for health service planning. There remains a need to understand and improve the survival and quality of life (QoL) of these children and to accurately plan for their future care needs.

The KIDSCREEN is a validated QoL measure developed across 13 European countries as a self-report questionnaire for healthy and chronically ill children and adolescents aged 8 to 18 years. Few studies have assessed QoL in children born with congenital anomalies, those that have are assessing health status and functioning not QoL and none have used KIDSCREEN.