Congenital heart anomalies, frequently called Congenital Heart Defects or Congenital Heart Disease (CHD), refer to a range of birth defects that affect the normal structures or functioning of the heart and its key connecting vessels causing it to work abnormally. There are various types of CHD ranging from mild disease with minimal symptoms to more serious or complex defects with life threatening symptoms.
CHD is the most common group of major birth defects. In the United Kingdom, almost 9 out of every 1000 babies born alive have a form of CHD. Advances in diagnoses and treatments have significantly increased the number of children living into adulthood with CHD. Although we know that survival has improved, we actually have limited estimates of how long children with different types of CHD survive compared to children without CHD. Survival estimates are often based on small patient groups, may include only people with severe CHDs, or estimate short-term survival after major heart surgery or interventions.
Focussing on children from birth up to age 20, this study aims to describe survival across different types of CHD compared with other children using population-based linked general practice and hospital data.
Congenital Heart Defects (CHD) account for nearly one-third of all major congenital anomalies and an increasing number of children with CHD are living into adulthood. Our objective is to describe the survival of children diagnosed with CHD up to the age of 20 years, overall and across subtypes of CHD that range from milder small ventricular septal defects to more severe and complex conditions such as tetralogy of Fallot. To identify which children have CHD by subtype, we will combine diagnostic codes from primary care and secondary care hospital episode statistics (HES), surgical/intervention codes specific to CHD repair and treatment from HES, and office of national statistics causes of death. We will describe mortality (survival rates) at different ages according to factors such as subtype, sex, ethnicity and socioeconomic group. We will also use survival curves and Cox regression analysis, taking into account the timing of interventions and other potentially contributing factors such as sex, ethnicity and socioeconomic group to enable comparison of their survival to the general population.
Survival of children with congenital heart disease
• Causes of death for children with congenital heart disease
Laila Tata - Chief Investigator - University of Nottingham
Laila Tata - Corresponding Applicant - University of Nottingham
Jack Gibson - Collaborator - University of Nottingham
Linda Fiaschi - Collaborator - University of Nottingham
Lu Ban - Collaborator - University of Nottingham
Toluwalope Yetunde Onuwe - Collaborator - University of Nottingham
CPRD Mother-Baby Link;HES Admitted Patient Care;HES Outpatient;ONS Death Registration Data;Patient Level Index of Multiple Deprivation