Congenital heart disease, including paediatric surgery

The congenital heart disease website profiles every congenital heart disease centre in the UK, including the number and range of procedures they carry out and survival rates for the most common types of treatment. Congenital heart disease refers to any defect of the heart present from birth. It includes structural defects, congenital arrhythmias, and cardiomyopathies. At least eight in every 1,000 babies are born with a heart or circulatory condition and only a quarter of these are detected by ultrasound scans.

The Congenital Heart Disease Website has been developed to help parents and carers make informed decisions about their child's care. The initiative comes ten years after the Bristol Inquiry and, by presenting the results of interventions for public and professional scrutiny, is designed to reassure parents about the quality of care available to their child.

Aims of the audit

The audit aims to monitor care and provide national analysis of outcomes of paediatric cardiac surgery and therapeutic cardiac catheterisations procedures in children with congenital heart disease. The audit was commissioned as a direct result of the Bristol Inquiry Report (2001).

• to provide the means for hospitals to record and compare both immediate and long-term outcomes of children with congenital heart disease
• to provide long term comparative statistics for each hospital contributing in the audit. At present this includes survival rates at 30 days and one year after treatment
• the ability to track re-intervention wherever it takes place, enabling clinicians to identify the long-term outcomes for patients following any specific treatment
• to provide clinicians and the public with more accurate information about likely outcomes of current treatments
• to provide validated, centre specific survival results (30 days and one year) after treatment for children with congenital heart disease in the public domain
• to provide verbal and written feedback to each centre on data completeness and quality following validation visits, to include advice on best practice from other centres to optimise data quality and data collection efficiency
• to facilitate the development and validation of risk stratification for surgery and therapeutic catheterisation in congenital heart disease
• to facilitate detection of best practice in terms of survival and freedom from re-intervention, thereby improving patient care
• to facilitate detection of poor performance by providing validated information to bodies involved with ongoing quality assurance thereby improving patient care.

Organisation of the audit

The audit is being managed by the Health and Social Care Information Centre's (HSCIC) Clinical Audit Support Programme (NCASP) in conjunction with specialists from the Society for Cardiothoracic Surgery and The British Congenital Cardiac Association.

The National Clinical Audit Support Programme at the NHS Information Centre

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