2022-10-01

Transition working group - please complete the survey

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On behalf of the Transition Working group lead and members, João Madaleno, Isabel Goncalves, and Ruth De Bruyne, and as announced during the members’ meeting, ERN RARE-LIVER are forwarding you the request below. Please invest ten minutes of your time to complete the very important survey. The survey will be online until 15th October.

Transition is an active and evolving process that addresses the medical, psychosocial, and educational needs of young people as they prepare to move from child-centered to adult-centered health care. Although there is broad agreement that preparation is needed to help adolescents and young adults during this process, as highlighted by a previous Position Statement from ESPGHAN and EASL (JPGN 2018; 66:976–990), there is no consensus regarding what constitutes successful health care transition and only a few centers have created specific transition guidelines.

To ensure a broader view of the different transition practices and challenges in Europe, we have set up an online survey for health care providers and we would appreciate if you could take the time to contribute (takes 5-10 minutes). We would be grateful if the survey could be completed by as many Hepatology centers within Europe, both adult and pediatric. We also encourage separate input per adult and pediatric center/department.

The collection of these data will provide important information for the workshop organized by the ERN RARE-LIVER transition working group on 17th and 18th March 2023 (https://rare-liver.eu/news/events) and can serve as a starting point for common European transition best practice recommendations.

You can access the survey via the link:

A workshop will be held in Ghent early next year to use of the data collected.
For more information, see: Transition of care for patients with rare liver disease throughout Europe: bridging the gap, 17 to 18 March 2023 in Ghent (rare-liver.eu).

Link to event