I wanted to write about this issue for a while, but it is a very complex problem. There are many studies which show varying outcomes of pediatric, and in particular neonatal, heart surgery. By which I mean that some programs have fewer survivors than others. This discrepancy has been most closely examined in the UK, where the centrally controlled nature of the health service, and what is widely known as the ‘Bristol heart scandal’, led to a revolution in transparency. Survival figures for various pediatric heart surgeries are now publicly available. (you can see them easily, follow this link for overall survival figures for each condition then click on the name of the individual procedure or condition for a comparison between hospitals). Unfortunately these data are not risk adjusted, but they do show how far transparency has progressed, from the days when everything was secret, and no-one new anyone else’s success rates, (unless they published them in a journal, which was usually when the results were considered extra good!)

I want to mention one amazing publication from several years ago, from a very well respected children’s heart surgeon, Marc de Leval from GOSH in London (that’s Great Ormond Street Hospital as anyone who watched the olympic opening ceremony will know).  He published his own series of arterial switch procedures for transposition of the great vessels, noting that he started doing the procedure with good success, then had a series of deaths, so, instead of doing what many have done in the past (either ignoring the situation, blaming sicker than usual patients, or blaming the intensive care staff of anyone else that they can think of) analyzed the data very carefully (using a statistical technique that I later used for a publication), realized there was a real problem, stopped doing the surgery, went away and got retrained and closely examined every aspect of peri-operative care, and then started operating again with better results. He also then published his series of surgical failures, which may well have been a first! Most importantly he described how he had reacted to situation and demonstrated how a competent, compassionate, and thoughtful physician should respond when things aren’t going how they should. (He subsequently published another important paper examining how ‘human factors’ affect survival rates for the same procedure.)

I think Dr de Leval’s example and influence made a big difference in how subsequent events in the UK have played out.

One thing that became clear was that bigger programs had lower mortality than smaller programs, and that risk adjustment did not change this. A systematic review was carried out (entitled The Relation Between Volume and Outcome in Paediatric Cardiac Surgery. A Literature Review for the National Specialised Commissioning Group) which has confirmed that this is a reproducible effect.

As a result, many pediatric heart surgery programs in England have been closed, and the patients are cared for in one of a very small number of hospitals, and the latest round of re-organization will reduce this to only 7 centers for England and Wales.

Now a recent publication notes that center volume is not the only issue in the variation in survival between centers (using the Norwood procedure as an example: Pasquali SK, Jacobs JP, He X, Hornik CP, Jaquiss RD, Jacobs ML, O’Brien SM, Peterson ED, Li JS: The complex relationship between center volume and outcome in patients undergoing the norwood operation. Ann Thorac Surg 2012, 93(5):1556-1562.) which is sort of self-evident, but this new publication does show that there is still a statistically significant relationship between center volume and survival.

What should this mean for a health care system? The overall recommendations for pediatric heart surgery in England and Wales are presented in a very pretty pdf document. These evidence based recommendations are: that a surgeon should have at least 125 cases a year, that each center should have at least 4 surgeons , and that this means only 7 centers, for a population of about 50 million. If we translate this to Quebec, where we have multiple small programs at present, there should be 1 pediatric heart surgery center. That is what a previous health minister (Couillard) tried to do some years ago, but the vested interests in the different universities all colluded to prevent it happening. We do not know what the survival rates are in the various centers in Quebec, I do not even know what they are in my own hospital, but unless we are different to everywhere else in the world it could only help the babies to amalgamate the programs and put them in one center. Personally I don’t care where that would be, we need to do it for the babies with heart disease.