What information does the website include?
This website provides information about surgical and catheter procedures from congenital heart units across the UK. It shows the number and type of procedure carried out each year at a national and individual hospital level. The information is broken down into four age groups:
- neonates - up to 30 days old
- infants - between 31-365 days old
- children - between one and 16 years old
- adult - 16 years and older
The site profiles every congenital heart disease centre in the UK. It also shows survival rates for the most common types of procedures.
Information on Adult Congenital Heart Disease Patients
Children with congenital heart disease are treated in a small number of specialised (tertiary) centres, all of whom send their outcome data to National Congenital Heart Disease Audit. Some adults with congenital heart disease are also treated at these specialised centres. However, many adults are also treated at other cardiac centres who do not currently send their data to National Congenital Heart Disease Audit. This means that data on this site on the survival of patients over the age of 16 is not complete. NHS England continue to encourage these centres to participate in the national audit. However, it is likely to be a few years before the information on adult congenital heart disease patients on this site is complete.
If you are unable to find your centre in the list of congenital heart disease centres, please discuss this with your cardiologist. Your cardiologist will also be able to discuss survival rates for any procedures they carry out with you.
Further information on Adult Congenital Heart Disease in the UK:
www.guch.org.uk
Where does the information come from?
The information comes from The National Institute for Cardiovascular Outcomes Research (NICOR) which collects data via its National Congenital Heart Disease Audit for the National Heart Disease Audits.
What does the information tell me?
The information will tell you the overall numbers and the overall percentage chance of survival of the more common procedures carried out for congenital heart disease in the whole of the UK, as well as in each of the 16 congenital heart centres.
Will it tell me about my child's chances of surviving a particular procedure?
No. The information is not able to tell you the precise risk of an individual patient dying during or after a procedure. This is dependent on the individual patient's circumstances such as age, general health and the specific detail of the heart abnormality. Your cardiologist or cardiac surgeon will be able to discuss these factors with you.
How should I use the information to make decisions about my child's care?
The site has been developed to provide useful information about interventional treatment (surgery and catheter procedures) for congenital heart disease. You can use the information to see the overall percentage survival chance for the more common procedures at individual units and in the UK as a whole. You can also find out and compare how many of each type of procedure are being performed at each unit.
You will be given time to discuss treatment options with your or your child’s heart specialist (cardiologist). You should make sure you fully understand the treatment being offered and the risks involved before you give your consent.
What does it mean if one centre's survival looks lower than another's?
Several factors can affect mortality rates at individual centres. For example,some surgeons and some centres operate on patients who are at greater risk of dying. A centre which operates on more difficult cases (such as small babies with very complex heart disease or children with multiple abnormalities) would reasonably be expected to have a higher mortality rate than the national average. Without taking such factors into account, it is quite possible that a surgeon or centre with a higher mortality rate could actually be ‘better’ than one with a lower mortality rate. It is important to understand that there is a natural variation in mortality rates from year to year. Therefore a higher (or lower) mortality rate in one particular year is not necessarily an accurate guide to the performance of that centre. In this site, we have done our best to show statistically whether each centre’s results for each specific procedure appear to be within safe limits in comparison with the National average.
Why doesn't the site show the results of individual operators?
Individual surgeons’ and cardiologists’ results would be misleading as children and adults with congenital heart disease are treated by a team rather than by an individual. NICOR will consider publishing individual teams’ results in the future when we have more robust means of adjusting results to take into account the complexity of the cases. It is important to discuss any proposed procedures with the consultants leading your local teams and to feel free to ask specifically about their experience and results.
What happens if a centre's results appear poor?
If an outlier is detected, the National Congenital Heart Disease Audit follows the Department of Health policy on the Detection and management of outliers.
Who can I contact for general advice on treatment of Congenital Heart Disease?
The staff at your local congenital heart disease centre will be pleased to answer any questions you have about congenital heart disease. General information about congenital heart disease and general advice for families and patients is also available from the Children's Heart Federation and its affiliated support groups. Information on the more common types of congenital heart disease is also available from the British Heart Foundation.
NICOR are keen to supply useful information. We welcome your suggestions about how we can improve this website and the information we provide. If you have any views about the information presented, please let us know.
nicor-helpdesk@bartshealth.nhs.uk