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Transition Services for Paediatric Inflammatory Bowel Disease: A Multicentre Study of Practice in the United Kingdom
James J Ashton1,2, Priya Narula3, Fevronia Kiparissi4
1Department of Paediatric Gastroenterology, Southampton Children's Hospital.
Insights
This UK study found that while most paediatric inflammatory bowel disease (IBD) centres initiate transition care by age 16, resources like dietetic and psychological support are inconsistently available, highlighting a need for standardized services.
Area of Science:
- Paediatric gastroenterology
- Inflammatory Bowel Disease (IBD) management
- Healthcare transition services
Background:
- Paediatric inflammatory bowel disease (IBD) patients represent a significant cohort requiring transfer from pediatric to adult healthcare services.
- Standardized transition care is crucial for optimizing both short-term and long-term patient outcomes.
- This study addresses the need to understand the current landscape of transition services for IBD in the United Kingdom (UK).
Purpose of the Study:
- To detail the current status of transition services for paediatric inflammatory bowel disease (IBD) patients across the UK.
- To identify existing practices, available resources, and facilities within specialist IBD centres.
- To gather data that can inform the development of a national strategy for improving transition care.
Main Methods:
- A nationwide study was conducted involving specialist paediatric IBD centres in the UK.
- Data were collected from 20 out of 21 invited centres (95% response rate).
- Information gathered included timing of transition, available transition resources (clinics, staff, patient information), and future improvement plans.
Main Results:
- Transition typically begins before age 16, with transfer to adult care completed by age 18 in all responding centres.
- Joint clinics involving adult and paediatric gastroenterologists are universal, averaging 12.9 per year.
- Availability of essential support staff (dietitians, psychologists, surgeons) is inconsistent (<50% of centres), and key health topics are not always discussed (<60% discuss sexual health, contraception, pregnancy).
Conclusions:
- The study provides crucial real-world data on UK-wide transition services for paediatric IBD.
- Findings highlight variability in resource availability and service provision.
- The data can guide the development of a national strategy to standardize IBD transition care while allowing for local adaptation.
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.
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