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Liver disease in children is rare with just over 1000 children per year diagnosed in the UK. However, with improvements in diagnosis and surgical advances, <10% of these require liver transplantation or die while waiting for an organ or are not suitable liver transplant (LT) candidates. Post LT survivals are excellent with over 90% 1-year survival. Hepatoblastoma and biliary atresia are good examples where combined medical and surgical management (including liver transplantation) have achieved survival of over 90% compared with under 20% survival 40 years ago. These improved survivals are to be celebrated but have now created a new patient cohort of children with childhood onset of liver disease surviving to adulthood. These young adults have had to negotiate the difficult phase of adolescence, a special phase of human development where these gains could be easily compromised.
Liver disease management in adults apart from liver transplantation is not as centralised as in children, with only three specialised liver disease centres in the UK and Ireland, compared with seven adult LT centres across the UK. Non-transplant hepatology care for adults is provided in several regional and district general hospitals. Figure 1 shows the aetiology of liver disease in children versus adults. Current adult training programmes do not incorporate management of children with rare liver disease who survive into adulthood. We as paediatricians also have a responsibility to further improve the early detection of babies with biliary atresia from a large pool of neonatal jaundice that we see in our day-to-day practice. This article will highlight the issues that children encounter while growing up with liver disease and the perspective from an adult hepatologist (Dr Joshi) while managing these young adults. In addition, the article will also highlight the recommendations from the Lancet commission on liver disease in UK, published in the Lancet in …