Your background and research interests
I am Mark Davenport, one of the original consultant surgeons around at the start of the centralisation policy. Before that I was, and indeed still am, a surgeon with a major research interest in biliary atresia. Since 1999, I have done over 500 Kasai operations at Kings, and I travel to all corners of the globe talking, lecturing and even operating as a guest surgeon in some hospitals on this particular condition.
How did centralisation come about and why?
The first intervention for a child with biliary atresia is usually an exploration of the abdomen and confirmation of the problem. We then try and take away all the damaged visible bile ducts outside of the liver right down to its root, the so-called porta hepatis. We hope that this part contains microscopic bile ductular channels which retain some form of connection with the duct system within the liver. The porta hepatis is then joined to a loop of bowel. This surgery is termed the Kasai operation. Sounds easy – but following its introduction to the UK in the 1970s and early 1980s there were dramatically different results reported. The biggest unit at the time was Kings in London and it had much better outcomes compared to all the other units doing the Kasai. National reports were produced. Government response …. nil
The same survey was repeated in the early 1990s and by this time there were two big units, Kings and Birmingham, and its results showed the same things. The two units seeing more than 5 infants a year did significantly better than the rest. This time the government (only of England and Wales) of the day – Tony Blair’s if you remember – acted…. And the result was that all the other English Children’s hospital were prohibited from doing this surgery.
Why did they act then but not before? The time was right and it was politically correct to do so. Medical misfortunes were all over the press (remember the Bristol Children’s Hospital heart surgery “scandal”) and the results were clearly different.
So, on January 1999 the centralisation programme started with the two big centres and with the addition of the Leeds General Infirmary to cover the north of England.
Did it work? Well, we showed in a couple of papers (one in the Lancet and one in the Journal of Paediatric Surgery) that you could reproduce the better results seen before but for infants from all over the country. Indeed, we have convinced other countries to follow. So now there are centralisation programmes in Holland, Denmark, Norway, Sweden and Switzerland. The other gratifying thing is that outside of the English Department of Health, the devolved countries also took our lead and refer down to the English centres. Furthermore, the Republic of Ireland also refers across the Irish Sea their infants with biliary atresia.
What impact has centralisation had?
Centralisation has had a major impact on how we manage babies with biliary atresia. The referral process; diagnostic process, the surgery and the surgeons who do the operation are all streamlined and efficient… Large numbers make this happen.
As an example, our median age at the time of the Kasai operation is now 48 days…this is better than any country in the world. It’s better than those with more expensive health systems such as the USA where the median time is about 68-70 days; and even than those where there are active screening programmes for the disease such as parts of Japan and Taiwan where it’s about 65 days. Our clearance of jaundice rates – now over 65% – are consistently the best in Europe and North America, and our overall survival rates – which includes those transplanted and alive – are consistently over 95% at 10 years
Your thoughts on future development and areas of improvement
We need to maintain momentum and not rest on our laurels. From a clinical perspective it is important to know what to measure to ensure that this reflects good practice and outcome. Some of the things we pioneered as outcome variables have been taken up throughout the world such as “jaundice clearance rates to a certain level – < 20 umol/L within 6 months” which makes European and North American comparison possible at least. We have also used the Biliary Atresia Registry as a research tool and published on the epidemiological aspects of the condition, back in 2009, and are updating this currently with presentations to international societies.
Did you know BA is most common in London and least common in Lancashire?
We have also used collaboration between surgeons as the basis for randomised trials. Famously we published in Hepatology, the first ever prospective, randomised clinical trial of steroids (supported by CLDF of course) using infants from two of the three centres. Currently the three centres are also in a collaborative trial looking at prevention of adhesions, after surgery using a particular sprayed compound (Co Seal™, Baxter Inc.)
Nonetheless, we could do better. Research into the origins and causes of the disease is very much lacking in the UK and we have been a little slow in organising collaborative lab-based studies. King’s work on the effect of the cytomegalovirus (CMV) on the onset and outcome of biliary atresia has not been taken up by the other centres for instance.