Transition Services for Paediatric Inflammatory Bowel Disease

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.

Journal of Pediatric Gastroenterology and Nutrition—The Highlights of 2021

“…Disease severity did not affect HME rates. These studies highlight areas to address in transition of care, and add to the data from Ashton et al (6) who reported gaps and opportunities in transition services for children with IBD in a multicenter study from the United Kingdom.…”

Variation in access and prescription of vedolizumab and ustekinumab in paediatric patients with inflammatory bowel disease: a UK-wide study

“…Twenty-one paediatric gastroenterology centres were identified across England, Wales, Scotland and Northern Ireland representing specialist centres for PIBD as previously described 13. An electronic survey was used to report experience.…”

Response to: Transition Services for Paediatric Inflammatory Bowel Disease: Ready for Asian Patients Yet?

“…The response highlights the lack of formal transition services when the condition is rare. Extrapolation of this observation to other paediatric conditions indicates that many children will not have a structured transition process, something which has been associated with poorer outcomes in conditions such as IBD (2). The need for IBD transition guidelines is clear, however we also acknowledge the need to account for local factors such as patient background, disease prevalence and geographic distribution of adult hospitals.…”

“…R eply: We read with interest the response by Yang et al (1,2) to our article on transition services for paediatric inflammatory bowel disease (IBD) in United Kingdom. The response highlights the lack of formal transition services when the condition is rare.…”