Pietro Vajro1, Björn Fischler2, Patrizia Burra3, Dominique Debray4, Antal Dezsofi5, Salvatore Guercio Nuzio1, Nedim Hadzic6, Loreto Hierro7, Joerg Jahnel8, Thierry Lamireau9, Patrick McKiernan10, Valerie McLin11, Valerio Nobili12, Piotr Socha13, Francoise Smets14, Ulli Baumann15, Henkjan J Verkade16. 1. Department of Medicine, Surgery and Dentistry, "Scuola Medica Salernitana" Paediatric Section, University of Salerno, Baronissi (Salerno), Italy. 2. Department of Paediatrics, Karolinska University Hospital, CLINTEC, Karolinska Institutet, Stockholm, Sweden. 3. Multivisceral Transplant Unit, Department of Surgery, Oncology and Gastroenterology, Padova University Hospital, Padova, Italy. 4. Paediatric Centre, Hepatology, and Transplantation AP-HP, Hôpital Necker Enfants Malades, Paris, France. 5. First Department of Paediatrics, Semmelweis University, Hungary. 6. Paediatric Gastrointestinal, Liver and Nutrition Centre Variety Children's Hospital King's College Hospital NHS Foundation Trust, London, UK. 7. Hospital Infantil Universitario La Paz, Madrid, Spain. 8. Department of Pediatrics, Division of Gastroenterology and Hepatology, Medical University Graz, Austria. 9. Paediatric Gastroenterology Unit, Children's Hospital, Bordeaux, France. 10. Center for Rare Disease Therapy, Children's Hospital of Pittsburgh of UPMC, University of Pittsburgh Medical Center, Pittsburgh, PA. 11. Swiss Centre for Liver Disease in Children, Paediatric Gastroenterology Unit, Department of Paediatrics, University Hospitals Geneva, Switzerland. 12. Unit of Hepato-Metabolic Diseases, Bambino Gesù Children's Hospital, IRCCS, Rome, Italy, and University "La Sapienza" Rome, Italy. 13. Department of Gastroenterology, Nutritional Disorders and Pediatrics, The Children's Memorial Health Institute, Warsaw, Poland. 14. UCL, Cliniques Universitaires Saint-Luc, Paediatric Gastro- Hepatology, Brussels, Belgium. 15. Medical School, Children's Hospital, Division of Paediatric Gastroenterology and Hepatology, Hannover, Germany. 16. Department of Paediatrics, Center for Liver, Digestive, and Metabolic Diseases, University of Groningen, University Medical Center, Groningen, The Netherlands.
Abstract
BACKGROUND: Medical advances have dramatically improved the long-term prognosis of children and adolescents with once-fatal hepatobiliary diseases. However, there is no generally accepted optimal pathway of care for the transition from paediatric care to the adult health system. AIM: The purpose of this position paper is to propose a transition process for young people with paediatric onset hepatobiliary diseases from child-centred to adult-centred healthcare services. METHODS: Seventeen ESPGHAN/EASL physicians from 13 countries (Austria, Belgium, France, Germany, Hungary, Italy, the Netherlands, Norway, Poland, Spain, Sweden, Switzerland, and United Kingdom) formulated and answered questions after examining the currently published literature on transition from childhood to adulthood. PubMed and Google Scholar were systematically searched between 1980 and January 2018. Quality of evidence was assessed by the Grading of Recommendation Assessment, Development and Evaluation (GRADE) system. Expert opinions were used to support recommendations whenever the evidence was graded weak. All authors voted on each recommendation, using the nominal voting technique. RESULTS: We reviewed the literature regarding the optimal timing for the initiation of the transition process and the transfer of the patient to adult services, principal documents, transition multi-professional team components, main barriers, and goals of the general transition process. A transition plan based on available evidence was agreed focusing on the individual young people's readiness and on coordinated teamwork, with transition monitoring continuing until the first year of adult services.We further agreed on selected features of transitioning processes inherent to the most frequent paediatric-onset hepatobiliary diseases. The discussion highlights specific clinical issues that will probably present to adult gastrointestinal specialists and that should be considered, according to published evidence, in the long-term tracking of patients. CONCLUSIONS: Transfer of medical care of individuals with paediatric onset hepatobiliary chronic diseases to adult facilities is a complex task requiring multiple involvements of patients and both paediatric and adult care providers.
BACKGROUND: Medical advances have dramatically improved the long-term prognosis of children and adolescents with once-fatal hepatobiliary diseases. However, there is no generally accepted optimal pathway of care for the transition from paediatric care to the adult health system. AIM: The purpose of this position paper is to propose a transition process for young people with paediatric onset hepatobiliary diseases from child-centred to adult-centred healthcare services. METHODS: Seventeen ESPGHAN/EASL physicians from 13 countries (Austria, Belgium, France, Germany, Hungary, Italy, the Netherlands, Norway, Poland, Spain, Sweden, Switzerland, and United Kingdom) formulated and answered questions after examining the currently published literature on transition from childhood to adulthood. PubMed and Google Scholar were systematically searched between 1980 and January 2018. Quality of evidence was assessed by the Grading of Recommendation Assessment, Development and Evaluation (GRADE) system. Expert opinions were used to support recommendations whenever the evidence was graded weak. All authors voted on each recommendation, using the nominal voting technique. RESULTS: We reviewed the literature regarding the optimal timing for the initiation of the transition process and the transfer of the patient to adult services, principal documents, transition multi-professional team components, main barriers, and goals of the general transition process. A transition plan based on available evidence was agreed focusing on the individual young people's readiness and on coordinated teamwork, with transition monitoring continuing until the first year of adult services.We further agreed on selected features of transitioning processes inherent to the most frequent paediatric-onset hepatobiliary diseases. The discussion highlights specific clinical issues that will probably present to adult gastrointestinal specialists and that should be considered, according to published evidence, in the long-term tracking of patients. CONCLUSIONS: Transfer of medical care of individuals with paediatric onset hepatobiliary chronic diseases to adult facilities is a complex task requiring multiple involvements of patients and both paediatric and adult care providers.
Authors: Ekaterina Khaleva; Marta Vazquez-Ortiz; Pasquale Comberiati; Audrey DunnGalvin; Helena Pite; Katharina Blumchen; Teresa Garriga-Baraut; Valerie Hox; Alexandra F Santos; Claudia Gore; Rebecca C Knibb; Cherry Alviani; Charlotte G Mortz; Elizabeth Angier; Bettina Duca; Britt Jensen; Silvia Sanchez-Garcia; M Hazel Gowland; Frans Timmermans; Oliver Pfaar; Graham Roberts Journal: Clin Transl Allergy Date: 2020-10-07 Impact factor: 5.871