J Pediatr Gastroenterol Nutr. 2021 Aug 1;73(2):251-258.doi: 10.1097/MPG.0000000000003148.

James J Ashton ^1 2, Priya Narula ³, Fevronia Kiparissi ⁴, Christine Spray ⁵, David C Wilson ⁶, Rachel Tayler ⁷, Lucy Howarth ⁸, Franco Torrente ⁹, Protima Deb ¹⁰, Fiona L Cameron ¹¹, Rafeeq Muhammed ¹², Thankam Paul ¹³, Jenny Epstein ¹⁴, Maureen Lawson ¹⁵, Janis Maginnis ¹⁶, Veena Zamvar ¹⁷, Andrew Fagbemi ¹⁸, David Devadason ¹⁹, Hemant S Bhavsar ²⁰, Jochen Kammermeier ²¹, Robert M Beattie ¹

Author information

• ¹Department of Paediatric Gastroenterology, Southampton Children's Hospital.
• ²Human Genetics and Genomic Medicine, University of Southampton, Southampton.
• ³Department of Paediatric Gastroenterology, Sheffield Children's NHS Foundation Trust, Sheffield.
• ⁴Department of Paediatric Gastroenterology, Great Ormond Street Hospital, London.
• ⁵Department of Paediatric Gastroenterology, Bristol Royal Hospital for Children, Bristol.
• ⁶Department of Paediatric Gastroenterology, The Royal Hospital for Sick Children, Edinburgh.
• ⁷Department of Paediatric Gastroenterology, Royal Hospital for Children Glasgow, Glasgow.
• ⁸Department of Paediatric Gastroenterology, Oxford University Hospitals, Oxford.
• ⁹Department of Paediatric Gastroenterology, Addenbrooke's Hospital, Cambridge.
• ¹⁰Department of Paediatric Gastroenterology, The Royal London Hospital, Barts Health NHS Trust, London.
• ¹¹Department of Paediatric Gastroenterology, Alderhey Children's Hospital NHS Foundation Trust, West Derby, Liverpool.
• ¹²Department of Paediatric Gastroenterology, Birmingham Children's Hospital, Birmingham.
• ¹³Department of Paediatric Gastroenterology, St. Georges University Hospital NHS Foundation Trust.
• ¹⁴Department of Paediatric Gastroenterology, Chelsea and Westminster Hospital, London.
• ¹⁵Department of Paediatric Gastroenterology, The Newcastle Upon Tyne Hospitals NHS Foundation Trust, Newcastle.
• ¹⁶Department of Paediatric Gastroenterology, University Hospitals of North Staffordshire NHS Trust, Stoke-On-Trent.
• ¹⁷Department of Paediatric Gastroenterology, Leeds Children's Hospital, Leeds Teaching Hospitals NHS Trust, Leeds.
• ¹⁸Department of Paediatric Gastroenterology, Royal Manchester Children's Hospital, Manchester, UK.
• ¹⁹Department of Paediatric Gastroenterology, Nottingham Children's Hospital, Queens Medical Centre, Nottingham.
• ²⁰Department of Paediatric Gastroenterology, University Hospitals of Leicester NHS Trust, Leicester.
• ²¹Department of Paediatric Gastroenterology, Evelina London Children's Hospital, UK.

Abstract

Objectives: Patients with paediatric inflammatory bowel disease (IBD) constitute one of the largest cohorts requiring transition from paediatric to adult services. Standardised transition care improves short and long-term patient outcomes. This study aimed to detail the current state of transition services for IBD in the United Kingdom (UK).

Methods: We performed a nationwide study to ascertain current practice, facilities and resources for children and young people with IBD. Specialist paediatric IBD centres were invited to contribute data on: timing of transition/transfer of care; transition resources available including clinics, staff and patient information; planning for future improvement.

Results: Twenty of 21 (95%) of invited centres responded. Over 90% of centres began the transition process below 16 years of age and all had completed transfer to adult care at 18 years of age. The proportion of patients in the transition process at individual centres varied from 10% to 50%.Joint clinics were held in every centre, with a mean of 12.9 clinics per year. Adult and paediatric gastroenterologists attended at all sites. Availability of additional team members was patchy across the UK, with dietetic, psychological and surgical attendance available in <50% centres. A structured transition tool was used in 75% of centres. Sexual health, contraception and pregnancy were discussed by <60% of teams.

Conclusions: This study provides real-world clinical data on UK-wide transition services. These data can be used to develop a national strategy to complement current transition guidelines, focused on standardising services whilst allowing for local implementation.