NICOR: National Institute for Cardiovascular Outcomes Research

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Congenital Heart Disease

The deadline for uploading 2012  data (covering April 1st 2012 to March 31st 2013) is the 31st May 2013.

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.

Interpretation, analysis and presentation of clinical outcomes from cardiac surgery is complex. To ensure that patients and the public are not given misleading analyses and to ensure that the performance of organisations and individuals are not misrepresented, the following factors need to be taken into account:

1. Some surgeons and some hospitals operate on patients who are at greater risk of dying. For example, an experienced surgeon who operates on more difficult cases (such as small babies with very complex heart disease) would reasonably be expected to have a higher mortality rate than the national average.
2. Without taking such factors into account, it is quite possible that a surgeon classed as having a higher mortality rate may well be 'better' than a surgeon classed as having a lower mortality rate. A league table based on data that is not risk adjusted is likely to mislead patients and the public and misrepresent the performance of individuals and institutions. Taking all relevant factors into account is very complex. There is not yet a proven method for doing this for congenital heart disease treatment. For this reason the results on CCAD's website are based upon individual centres and not individual surgeons' survival rates.
3. Mortality rates depend on factors other than just the skill of the individual surgeon. For children or adults with congenital heart disease, outcomes depend on the skills of the whole team involved (including the post-operative care staff) and the hospital environment. This is not taken into account when associating named surgeons with mortality rates.
4. There is a natural variation in mortality rates from year to year. It is to be expected that mortality rates of individual surgeons vary from year to year. Therefore a high (or low) mortality rate in one particular year is not necessarily an accurate guide to the performance of a particular surgeon.
5. The statistical uncertainty in the mortality rate of a surgeon depends on how many operations they have performed. The more operations a surgeon performs, the more confident we can be that the mortality rate they are operating at is their 'true' mortality rate. Judging a surgeon on a small number of operations may lead to incorrect conclusions.

6. All congenital heart disease centres in the UK are working together to ensure provision of accurate audit data to the CCAD to enable provision of analyses which properly inform patients and the public and fairly represent clinical performance. In addition to these measures, each congenital heart disease centre holds regular multidisciplinary meetings to discuss mortality and morbidity with the aim of continuously assessing ways to improve treatment.