Best-practice recommendations for the transition care pathway for children and young people with moderate to severe ulcerative colitis: a modified Delphi panel with UK health care professionals
Lisa Gervais, Peter M Irving, James Ashton, Kwang Yang Lee, Naila Arebi, Priya Narula, Rebecca Little, Gemma Lee, Jochen Kammermeier, Nick Croft, Burak Sahin, Audrey Fahrny, Anna Barkaway, Katarina Johnson, Andy Easton, Patrice Carter, Richard K RussellObjective
In the UK, the incidence of paediatric-onset ulcerative colitis (UC) is rising. UC is incurable, thus paediatric patients will require transfer to adult healthcare services. Effective transition is critical for continuity of good care while optimising treatment outcomes; however, transitional care currently varies across the UK. We aimed to develop UK consensus recommendations to facilitate optimal management of children and young people with moderately to severely active UC transitioning from paediatric to adult care.
Design/Method
A modified Delphi, following the ACcurate COnsensus Reporting Document for Delphi research was conducted. Current clinical guidelines, treatment and transition pathways, pathway implementation and limitations were evaluated.
A panel, comprising paediatric and adult gastroenterologists, plus paediatric gastroenterology specialist nurses, most with over 15 years of individual experience managing UC, participated in two anonymous online surveys and an online consensus conference to develop recommendations.
Results
The Delphi study identified key areas for improvement, including the need for early preparation, tailored implementation and the integration of digital health resources. Consensus (agreement ≥75%) was achieved on the importance of structured transition pathways, developmentally appropriate guidance, joint clinics and the various healthcare professionals who should be involved in the transition process. The study highlighted potential barriers to the use of advanced therapies and the need for updated management guidelines.
Conclusion
The consensus recommendations developed provide a framework for optimising the transition pathway for children and young people with UC moving to adult care, to improve outcomes and ensure continuity of care during this critical period.