Pediatric to adult care transfer in rare liver diseases: Recommendations based on insights from a European omnistakeholder event
Karsten Vanden Wyngaert,
Janne Suykens,
Deirdre Kelly,
Isabel Goncalves,
Ena Lindhart Thomsen,
Jose Willemse,
Zoe Mariño,
João Madaleno,
Jemma Day,
Marianne Samyn,
Mohamed Ali,
Marianne Hørby Jørgensen,
Eva Goossens,
Johan De Munter,
Anneloes Van Staa,
Jo Wray,
Panayiota Protopapa,
Ansgar Lohse,
Ruth De Bruyne
Affiliations
Karsten Vanden Wyngaert
Department of Internal Medicine and Pediatrics, Faculty of Health Sciences, Ghent University, Ghent, Belgium; Centre for Nursing Excellence, Ghent University Hospital, Ghent, Belgium; European Reference Network of Hepatological Diseases (ERN-RARE LIVER), Hamburg, Germany
Janne Suykens
Department of Internal Medicine and Pediatrics, Faculty of Health Sciences, Ghent University, Ghent, Belgium; European Reference Network of Hepatological Diseases (ERN-RARE LIVER), Hamburg, Germany; Liver Research Center Ghent, Ghent University, Ghent University Hospital, Ghent, Belgium; Corresponding author. Address: C. Heymanslaan 10, 9000 Gent, Belgium.
Deirdre Kelly
European Reference Network of Hepatological Diseases (ERN-RARE LIVER), Hamburg, Germany; Department of Paediatric Hepatology, Birmingham Women's Hospital, Birmingham, UK
Isabel Goncalves
European Reference Network of Hepatological Diseases (ERN-RARE LIVER), Hamburg, Germany; Pediatric Liver Transplant and Hepatology Unit, Unidade Local de Saúde de Coimbra, Coimbra, Portugal
Ena Lindhart Thomsen
European Reference Network of Hepatological Diseases (ERN-RARE LIVER), Hamburg, Germany; Department of Pediatrics and Adolescent Medicine, Copenhagen University Hospital, Rigshospitalet, Denmark
Jose Willemse
European Reference Network of Hepatological Diseases (ERN-RARE LIVER), Hamburg, Germany; Dutch Liver Patients Association, Hoogland, The Netherlands
Zoe Mariño
European Reference Network of Hepatological Diseases (ERN-RARE LIVER), Hamburg, Germany; Liver Unit, Hospital Clinic Barcelona, IDIBAPS, CIBERehd, ERN-RARE Liver, Universitat de Barcelona, Barcelona, Spain
João Madaleno
European Reference Network of Hepatological Diseases (ERN-RARE LIVER), Hamburg, Germany; Internal Medicine Department, University Hospital Coimbra, Coimbra, Portugal
Jemma Day
European Reference Network of Hepatological Diseases (ERN-RARE LIVER), Hamburg, Germany; Institute of Liver Studies, King's College Hospital, London, UK
Marianne Samyn
European Reference Network of Hepatological Diseases (ERN-RARE LIVER), Hamburg, Germany; Paediatric Liver, Gastroenterology & Nutrition Centre, King’s College Hospital, London, UK
Mohamed Ali
European Reference Network of Hepatological Diseases (ERN-RARE LIVER), Hamburg, Germany; Paediatric Liver, Gastroenterology & Nutrition Centre, King’s College Hospital, London, UK
Marianne Hørby Jørgensen
European Reference Network of Hepatological Diseases (ERN-RARE LIVER), Hamburg, Germany; Department of Pediatric and Adolescent Medicine, JMC, Rigshospitalet, Copenhagen, Denmark
Eva Goossens
Department of Patient Care, Antwerp University Hospital, Antwerp, Belgium
Johan De Munter
Cancer Centre University Hospital Ghent, Ghent, Belgium
Anneloes Van Staa
European Reference Network of Hepatological Diseases (ERN-RARE LIVER), Hamburg, Germany; Research Centre Innovations in Care, Rotterdam University of Applied Sciences, Rotterdam, The Netherlands
Jo Wray
European Reference Network of Hepatological Diseases (ERN-RARE LIVER), Hamburg, Germany; Critical Care and Cardiorespiratory Department, Great Ormond Street Hospital for Children NHS Foundation Trust, Great Ormond Street, London, UK
Panayiota Protopapa
European Reference Network of Hepatological Diseases (ERN-RARE LIVER), Hamburg, Germany; Paediatric Liver, GI, and Nutrition Centre, Archbishop Makarios III Hospital, Nicosia, Cyprus
Ansgar Lohse
European Reference Network of Hepatological Diseases (ERN-RARE LIVER), Hamburg, Germany; Department of Internal Medicine and Gastroenterology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany
Ruth De Bruyne
Department of Internal Medicine and Pediatrics, Faculty of Health Sciences, Ghent University, Ghent, Belgium; European Reference Network of Hepatological Diseases (ERN-RARE LIVER), Hamburg, Germany; Department of Pediatric Gastroenterology, Ghent University Hospital, Ghent, Belgium
Background & Aims: The transfer journey from pediatric to adult care services of young people with rare liver diseases poses significant challenges and is an underexplored research area. This study examined the critical aspects of, and opportunities for, transfer journey management for these young people in Europe. Methods: In total, 72 individuals, representing 13 countries, participated in an omnistakeholder workshop on 17–18 March 2023. A standardized workshop methodology was used to discuss critical aspects and actions over nine focus sessions. The themes of these sessions were identified by engaging with healthcare providers, young people, and parents. Results (i.e. aspects receiving >25% of the votes) were ranked based on importance and validated by the European Reference Network of Hepatological Diseases (ERN RARE-LIVER) youth panel. Results: Our findings revealed that the critical aspects of transfer journey management predominantly revolved around the transfer itself. Most of the critical aspects and actions were related to improving communication (e.g. allocating sufficient time, 81% of votes; giving consistent information, 43%; and discussing communication preferences, 100%), relational continuity (e.g. appointing a transition person to liaison between stakeholders, 79%), and management continuity (e.g. using a transfer document, 60%). Our results also underscored the importance of peer mentorship programs (100%), informing young people about the transfer process (85%), and implementing joint consultations (93%). Conclusions: Current literature and guidelines on ‘transition’ might not fully address real-world challenges in rare liver diseases, particularly those concerning maintaining continuity of care during the actual transfer process. Future research should examine the effectiveness of strategies aimed at enhancing communication and continuity of care throughout the transfer journey, focusing on stakeholder experience. Impact and implications: 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.
