Pediatric to adult care transfer in rare liver diseases: Recommendations based on insights from a European omnistakeholder event
This international omnistakeholder workshop explored challenges and opportunities in managing transfer journeys for young people with rare liver diseases. By emphasizing practical implications (leading to actions), it provides a benchmark for improving transfer journeys worldwide, applicable to not only rare liver diseases, but possibly also common liver or other rare diseases. Our findings underscore the fundamental importance of the transfer itself in maintaining continuity of care. The critical aspects identified center around informative, relational, and management continuity of care and have been transformed into minimal criteria.
Authors
- Johan De Munter
- Déirdre Kelly (ORCID: https://orcid.org/0000-0001-9776-4354)
- Zoe Mariñó (ORCID: https://orcid.org/0000-0001-6321-9534)
- Marianne Samyn (ORCID: https://orcid.org/0000-0003-3837-2304)
- Ena Lindhart Thomsen (ORCID: https://orcid.org/0000-0002-2455-1793)
- João Madaleno (ORCID: https://orcid.org/0000-0001-5547-9424)
- Ruth De Bruyne (ORCID: https://orcid.org/0000-0002-5623-3300)
- Marianne Hørby Jørgensen (ORCID: https://orcid.org/0000-0003-0658-4636)
- Jo Wray (ORCID: https://orcid.org/0000-0002-4769-1211)
- Ansgar Wilhelm Lohse (ORCID: https://orcid.org/0000-0002-8823-3129)
- Jemma Day (ORCID: https://orcid.org/0000-0002-8201-2309)
- AnneLoes van Staa (ORCID: https://orcid.org/0000-0003-4496-3207)
- Eva Goossens (ORCID: https://orcid.org/0000-0003-3421-5256)
- Karsten Vanden Wyngaert (ORCID: https://orcid.org/0000-0002-3634-0715)
- Isabel Gonçalves (ORCID: https://orcid.org/0000-0001-9219-8787)
- Mohamed Ali
- José Willemse
- Panayiota Protopapa
- Janne Suykens
Institutions
- Universität Hamburg (DE)
- Great Ormond Street Hospital for Children NHS Foundation Trust (GB)
- Ghent University Hospital (BE)
- Hospitais da Universidade de Coimbra (PT)
- Copenhagen University Hospital (DK)
- Rigshospitalet (DK)
- Ghent University (BE)
- Birmingham Women's Hospital (GB)
- Antwerp University Hospital (BE)
- Escola Superior de Tecnologia da Saúde de Coimbra (PT)
- University Medical Center Hamburg-Eppendorf (DE)
- Hospital Clínic de Barcelona (ES)
- ERN GUARD-Heart (NL)
- Archbishop Makarios III Hospital (CY)
- King's College Hospital (GB)
- University of Coimbra (PT)
- Rotterdam University of Applied Sciences (NL)
Publication Details
- Journal
- JHEP Reports
- Published
- 2025-03-28
- DOI
- https://doi.org/10.1016/j.jhepr.2025.101403
- Citations
- 1
- Primary Topic
- Adolescent and Pediatric Healthcare
- Type
- article
- Field-Weighted Citation Impact
- 3.12