Welcome to The National Congenital Heart Disease Audit Website.
After consultation with our commissioners it has been agreed not to report numerical data for procedures with a frequency of <5 per year to ensure data protection. Procedures for numbers between 1 and 4 per year have been replaced with an asterix (*), but the overall reporting structure has not been altered. There may be changes to this approach after further discussions to ensure transparency of data reporting whilst maintaining appropriate data protection.
The publication of the annual National Congenital Heart Disease Audit Report 2013-16 will be delayed but expected to be published in September.
The publication of the annual National Congenital Heart Disease Audit Report 2013-16 will be delayed until further notice. NICOR do not currently have access to ONS life status data due to delays in processing our Data Sharing Agreement with NHS Digital. These agreements govern the provision of life status data to NICOR and our ability to share data.
The NCHDA has considered using hospital reported death as a surrogate for 30 day life status but the risk of error for using this approach would be estimated at approximately 8% of deaths, this means that as many as 18 individual cases in 2015-16 year could be misassigned as alive without ONS input . We considered this too high a risk of publishing erroneous results and decided to delay publication until ONS becomes available. We hope to receive the data early in 2017 but to date do not have a confirmed timetable from NHS Digital.
1 year follow up information is not yet available for the periods 2014-2015 and 2015-2016. The tables have been updated to reflect this. Life status returns have been temporarily suspended while NHS Digital process the Data Sharing Agreement that governs the provision of life status data to NICOR.
On the 11/9/2016 update the Portal did not include the hospital “Glasgow - Royal Hospital for Children” in the data tables. This has been restored.
The data on this website has been updated with unvalidated data for the 2015-2016 period. The validated data will be published on December 19th. 1 year follow up information is not yet available for this period.
The Independent Review of Children’s Cardiac Services in Bristol published its final report on 1/7/2016. The full report is available to download via the website (http://www.thebristolreview.co.uk/)
The PRAIS2 website project team have developed the site "UNDERSTANDING CHILDREN'S HEART SURGERY OUTCOMES". It is available here.
Following communication with contributing Trusts, we have been notified of an issue with the National Congenital Heart Disease Report 12-15 published on 4th April including minor inconsistencies with the tables and funnels for specific procedures. We have updated the report and the Specific Procedure tables and funnels. We apologise for any inconvenience this may have caused.
The analysis is based on 30,995 congenital heart disease surgery and interventional procedures submitted by 34 centres, including all 14 specialist centres.
• during 2014-15, the most recent year, 10,078 procedures were carried out, of which 7,258 were on children and 2,820 were on adults;
• the number of procedures undertaken and activity levels have increased by almost 40% since 2000;
• survival at 30 days after all 73 major surgical and cardiovascular interventions undertaken to treat congenital heart disease at any age was good in all centres. All hospitals had survival rates above the alarm limit for all procedures. Only two centres had 30 day survival rates which breached the alert limit for one of the 73 specific procedures during this period:
o Liverpool Heart and Chest Hospital (for surgical repair of atrial septal defect in adults, and
o Evelina London Children’s Hospital (for the Norwood procedure in children);
• both hospitals have been notified, the responses from the hospitals reviewed, and the quality of local services assured. Responses from both hospitals are available here.
A summary of the findings are provided in the NCHDA 2012-15 report available here. This includes centre level aggregate analysis for paediatric cardiac surgical procedures for 2012-15 page 16.
The full analysis of the specific procedures is available on this portal via the ‘specific procedures’ link.
The Health and Social Care Information Centre and Office for National Statistics acknowledge that the statutory process for the registration of death across England and Wales does not in all cases guarantee completeness at any specified date. In the case of a death referred to the coroner, in most cases, it cannot be registered until the coroner's enquiries have been completed and a death certificate issued and provided to the Registrar of Births and Deaths. For research studies looking at cause of death this may mean a delay in the reporting process of these deaths, which could affect some analysis. While every effort is made to discuss this issue with customers at the time of their request both the HSCIC and ONS wish to make this clear to all users of death registration data provided through the two organisations. Please see the ONS website for further details.
Please be aware of the Terms and Conditions with respect to reproducing items from this website.
The National Congenital Heart Disease Audit (NCHDA) is managed by the National Institute for Cardiovascular Outcomes Research (NICOR), is the largest and most comprehensive national audit of its kind in the world and is now in its 16th year. The audit collects data from all centres undertaking congenital cardiac surgery and interventional procedures in the UK.
Among the information provided on the portal are profiles of 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.
Patients, parents and carers are encouraged to regard the facts and figures in the site as a useful source of information. This knowledge can then be used together with the information they receive from their family doctor and heart specialist in making any decisions on treatment options.
The audit is commissioned by the Healthcare Quality Improvement Partnership as part of the National Clinical Audit Programme* and clinically led by the British Congenital Cardiac Association and The Society for Cardiothoracic Surgery in Great Britain and Ireland.
We welcome your feedback about how useful you have found the information on this website.
How to use this information
For more information about how to interpret the information and more information about the site, go to information for patients