Current transition management of adolescents and young adults with Liver Diseases: an ERN RARE-LIVER survey

Substantial advances in the diagnosis, treatment, and long-term care of children presenting paediatric liver disease mean that survival into adulthood is now the expectation rather than the exception.

Increasing numbers of young adults, grow up with liver disease or have received a liver transplant, and therefore present the adult hepatologist with potentially unfamiliar conditions. The transition of these young adults (YA) from paediatric to adult health services is a challenging time for patients, parents and health care providers, and an increased risk for medical complications and morbidity surrounding transfer, is well documented.
In 2014, Björn Fischler and colleagues conducted a survey regarding this topic and identified the main barriers for an adequate transition process. Since then, a Position Paper from ESPGHAN and EASL has been published, addressing how to initiate and implement a Health Care Transition Programme.

Almost 10 years later, on behalf of the European Reference Network (ERN) RARE-LIVER, the Transition Working group conducted a new survey within Europe, exploring current practice. With 90 contributions from 27 different countries, we believe that we have a clear picture of on the current state of affairs throughout Europe and perhaps, the most striking finding is that little has changed during these years. The importance of transition services for YAs is clearly recognized, but the infrastructure is still lacking.

With the results of our survey, we hope to raise awareness and encourage discussion on this important issue, aiming to improve management and continuity of care during adolescence and into adulthood, in order to achieve the best healthcare outcomes.