The workshop was funded by the Authority for Science and Research of the Free and Hanseatic City of Hamburg (Program for cooperation projects within the Baltic Sea Region) and the European Commission (ERN RARE-LIVER).
Originally planned as a two-and-a-half-day in-person meeting with a program covering various QoL topics across all major autoimmune liver diseases, it had to be significantly reduced due to Covid-related restrictions. It was a hybrid meeting with active on-line participants from the UK, the Netherlands, Denmark, Hungary, Poland and Germany.
Sessions covered issues related to general aspects of QoL assessment and more specifically, to autoimmune hepatitis. Prof. Bernd Löwe from Hamburg, an expert in psychosomatic medicine, explained the rationale and methodology of QoL assessment in rare diseases. Prof. Piotr Milkiewicz addressed an extremely important topic of adherence to medication and its effect on the success of clinical management in his presentation. In a session dedicated to autoimmune hepatitis (AIH), Prof. Christoph Schramm from Hamburg shared his knowledge on the assessment of QoL and Dr. Maciej Janik focused on depression.
QoL aspects in paediatric medicine have hardly been investigated, but are extremely exciting. For this reason, Prof. Piotr Socha from Warsaw Childrens Hospital coordinated a paediatric session which included his presentation on QoL in Wilson`s disease and two on-line talks: one by Prof. Ullrich Baumann from Hannover adressing QoL aspects in rare inborn genetic conditions, and the other by Prof. Jan Hulscher from Groningen sharing his unique experience on QoL in biliary atresia.
The meeting was also an excellent opportunity to catch up with ongoing ERN QoL projects. Dr. Ewa Wunsch summarized the progress in our large on-line patients’ survey on various aspects of QoL in non-transplanted patients with autoimmune liver disease and Dr. Tom Gevers from Nijmegen recapped recent developments in our ERN cross sectional AIH project which includes 14 centres from various countries.
Last but not least, the presence of Jose Willemse, an Executive Director of the Dutch Liver Patients Association was particularly appreciated. Jose actively participated in all discussions tackling various problems from the patient perspective. Her thoughts regarding, for example, management of patients who are transferred from paediatric to adult care contributed a lot to our knowledge and understanding of this complicated issue.
Highly inspiring, with important contributions, and perfectly timed – the workshop was perceived by all participants as a perfect starting point for future joint QoL projects. A follow-up workshop is planned for the coming year, and so is a larger joint ERN application in the area of QoL research.