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.

Staff

Dr Svetlana Glinyanaya
Team Scientist

Professor Judith Rankin
Prof Maternal & Perinatal Epidemiology