Information about the performance of heart surgery centres is available through the  NICOR CCAD database.

From Saturday 1 July 2017 the National Institute for Cardiovascular Outcomes Research will be hosted at Barts Health to manage the new National Cardiac Audit Programme.

For patients and the public
Read more information on the national cardiac clinical audits
If you have any questions, please contact 0203 765 8542 or email
nicor-generalenquiries@bartshealth.nhs.uk

What is the purpose/aim of the portal?

The Health and Social Care Information Centre (HSIC) has developed the Congenital Heart Disease Portal to:

• Give parents and carers of heart children information on procedures and types of surgery used to treat congenital heart conditions so that they can make informed choices about their child’s care and treatment. The portal provides information on the number of procedures (or operations) that have been carried out at each of the congenital heart disease centres in the UK. It also provides the rates of survival for the most common types of congenital heart surgery and catheter procedures.

• Monitor the results for individual centres and ensure that their outcomes for particular procedures are not statistically poorer than average. If this does happen, a detailed examination of the centre’s results would take place, and procedures put into action if the concerns are confirmed.

Who developed the portal?

The portal has been developed by the Health and Social Care Information Centre (HSIC), using information collected by its Central Cardiac Audit Database (CCAD). This has been in collaboration with the Society for Cardiothoracic Surgery and the British Congenital Cardiac Association (BCCA) –  formerly the British Paediatric Cardiac Association – and funded by the Healthcare Commission, the independent watchdog of healthcare in England.

What information does it provide?

The portal provides, for the first time, statistical information about the rates of survival for patients who have had certain types of congenital heart surgery and catheter procedures at different surgical units across Great Britain.

It provides information such as how many procedures (or operations) have been carried out and the rate of survival for patients at each of the congenital heart disease centres in the UK. The data are broken down into four age groups: neonate (age up to 30 days), infant (31-365 days), child (up to 16 years old) and adult (aged 16 or over). The survival rates are shown at 30 days and one year after surgery or catheter procedure.

What information does it not tell me?

The information cannot tell you a specific individual’s chance of surviving a heart operation. This is dependent on each patient’s individual circumstances such as age, general health and the specific nature and details of their heart condition. Your cardiologist or cardiac surgeon will be able to discuss these issues with you.

How do I use this information?

You may find it useful to discuss the rates of survival for a particular procedure at a particular hospital with your/your childs surgeon or cardiologist before making a decision about care and treatment. However, it is important to note that this should not be the only information you should consider before making a decision about your/ your child’s heart surgery. We would advise you to discuss any decision you need to make with your cardiologist.

What are mortality rates?

Mortality rates are defined as the proportion of a population that dies during a specified period. On this portal, mortality or number of deaths for each procedure is shown at 30 days and then at 1 year.

What are morbidity rates?

Morbidity rates are defined as the percentage of people who have complications after a procedure or treatment.

Why aren’t the success/mortality rates of individual surgeons provided?

The developers of the portal have outlined their reasons for not showing individual surgeon’s success rates:

• They feel that providing individual surgeons success rates would be misleading because children and adults with congenital heart disease are treated by a team rather than by an individual.

• The developers also believe it is important to bear in mind that some surgeons and some hospitals operate on patients who are at greater risk of dying. For example, a centre which operates on more difficult cases (such as small babies with very complex heart disease or children with multiple defects) would reasonably be expected to have a higher mortality rate than the national average. Thus, the site suggests that when you take 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.

The HSCIC and CCAD have said that they will consider publishing individual teams results in the future when they have more robust means of adjusting results to take into account the complexity of the cases.

We recommend that you discuss any procedures with the cardiologist and surgeon and ask them specifically about their experience and success rates.

Congenital Heart Disease Centres

What information does this section provide?

This section provides information on all the congenital heart disease centres across the country. There is a link to more information on each centre including a profile of the unit, services provided, and a list of cardiologists and surgeons.

Understanding Children’s Heart Surgery Outcomes

This new website has been designed with the help of parents and families from the Children’s Heart Federation (CHF) and aims to help people make sense of published survival data about children’s heart surgery in the UK and Northern Ireland.

http://childrensheartsurgery.info/

Centre Activity

What information does this section provide?

This section shows the number of catheter and surgical procedures performed at each congenital heart disease centre submitting data to CCAD. You can view this information by year (the most recent data are from 2013-2014 and it goes back to 2000) by clicking on the tab on the top right which has a drop down list.

You can also click on individual centres to view more detailed information about them including hospital profiles, data completeness & surgical/catheter procedure statistics. Within the individual centre information, you can then click on any specific procedure, e.g. Aortic valve replacement Ross, to see the number of these procedures done in that centre for that year including analysis by age group and the mortality rate at 30 day status and 1 year status.

How do I find more information about a specific procedure?

Within the individual centre information, you can click on any specific procedure, e.g. Aortic valve replacement Ross, to see the number of these procedures done in that centre for that year including analysis by age group and the mortality rate at 30 day status and 1 year status.

What do Unk and ReOp mean?

Unk = Unknown
ReOp =Re-operated

What is a National Aggregate?

A national aggregate refers to a national sum total. In this section the national aggregate refers to the sum total of procedures carried out nationally.

How do I find the statistics for a specific procedure performed at a specific congenital heart disease centre/ paediatric cardiac centre?

In the Centre Activity section you can click on a specific centre to take you into the summary date for that centre, which includes a list of all the procedures. Click on the procedure you want information for. This will show you the statistics for that procedure performed at that specific unit (including total number of procedures and mortality rates).

Specific Procedures National Data

What information does this section provide?

This section shows the total number of each specific procedure conducted within a specific year and the mortality rate (as percentages) at 30 day and 1 year status. You can select a year from the tab on the top right. You can also click on any procedure e.g. Aortic valve replacement Ross, to see the number of these procedures done in that centre for that year including analysis by age group and the mortality rate at 30 day status and 1 year status.

How do I find the statistics for a specific procedure performed at a specific congenital heart disease centre/ paediatric cardiac unit?

In the Centre Activity section you can click on a specific centre to take you into the summary date for that centre, which includes a list of all the procedures. Click on the procedure you want information for. This will show you the statistics for that procedure performed at that specific unit (including total number of procedures and mortality rates).

National Statistics

What do these statistics show?

This section shows the national summary data by year, i.e. the total number of procedures and the national average mortality rates at 30 days and 1 year.
You can click on National Aggregate view for each year for more information on various procedures.

Other Questions

What should I do if I am concerned about the figures I have seen?

If you are concerned about any of the figures you see, you can phone the CCAD helpdesk on 0845 300 6016 or email them at helpdesk@ccad.org.uk. You can also call the Children`s Heart Federation helpline on 0808 808 5000 and we will try our best to help you with your concerns. Finally, you can also speak to your child’s cardiologist who may be able to answer more specific questions about their centre’s surgery figures.

Who can I contact to find out more about what the figures mean for my childs treatment?

You can phone the CCAD helpdesk on 0845 300 6016 or email them at helpdesk@ccad.org.uk to discuss how to interpret the figures and understand what they mean. You may also find it useful to discuss the rates of survival for a particular procedure at a particular hospital with your child’s surgeon or cardiologist before making a decision about care and treatment.

Where can I get more detailed information about heart conditions and the different procedures?

There is some information on the portal under the Glossary section (link on top left of the screen). You can also find information on some of the common heart conditions and their treatment on the Children`s Heart Federation website www.chfed.org.uk.

How do I arrange for my child to be treated at a different unit?

If you are unhappy for your child to be treated at a specific centre, you can seek a second opinion from a different cardiologist/surgeon at a different centre.

You can get a second opinion for your child by asking your GP or cardiologist to refer you to a different unit. The British Medical Association (BMA) advises doctors that they should respect a patient’s wish to obtain a second opinion unless there are justifiable reasons for refusal, e.g. that the patient might come to harm as a result. They also advise that requests for a second opinion be handled sensitively and wherever possible dealt with by the consultant. Patients should not be made to feel a nuisance or a bad patient.

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