Transitioning From Paediatric to Adult IBD Care: A Guide for Teens and Parents

For many teenagers with Crohn’s disease or ulcerative colitis, one of the biggest changes is not a new symptom or medication but a new waiting room. Moving from a familiar paediatric gastroenterology team to an adult clinic can feel abrupt, especially as appointments shorten and the emphasis shifts towards independence. This shift, known as transition, is a planned process rather than a single event, and getting it right can make a real difference to how well a young person manages their condition afterwards.

What is transition in IBD care?

Transition is the structured process of moving a young person with inflammatory bowel disease (IBD, covering Crohn’s disease and ulcerative colitis) from paediatric to adult healthcare services. It differs from “transfer”, the simple administrative act of changing clinics. Transition is broader: it involves building the knowledge, confidence, and practical skills needed to manage one’s own condition, ideally over several years rather than in one appointment.

Why it matters for gut inflammation and long-term health

IBD is a lifelong condition involving ongoing immune activity against the gut lining, and gaps in care during adolescence can allow this inflammation to go unchecked. Missed appointments, inconsistent medication use, or delayed recognition of a flare can increase the risk of complications, including strictures (bowel narrowing), fistulas (abnormal connections between the bowel and other tissue), or the need for surgery. A well-managed transition helps maintain continuity of monitoring and treatment at a time when young people are also managing exams, relationships, and growing independence, all of which can affect adherence and stress-related flares.

Key elements of a successful transition

Communication and shared clinical information

A smooth transition depends on clear communication between paediatric and adult teams, including shared access to test results, imaging, and treatment history. Incomplete handover can mean repeated tests or delays in starting appropriate treatment. Many services now use a formal transition letter or summary that travels with the patient, reducing the chance of important details being lost.

Building self-management skills

Paediatric care often involves parents managing appointments, medication schedules, and communication with the healthcare team. Adult services expect the patient to take this on themselves, including describing symptoms accurately, understanding their own regimen, and knowing when to seek help. Skills such as booking appointments, ordering repeat prescriptions, and recognising early flare signs are best introduced gradually through the teenage years rather than expected to appear overnight at eighteen.

Timing and readiness assessment

Age alone is a poor guide to readiness. Some IBD services use structured readiness questionnaires to assess whether a young person understands their condition, medications, and how to access support, allowing transition to be paced by individual maturity rather than a fixed birthday. Where possible, timing the move around a period of disease stability, rather than during a flare or major life change such as starting university, tends to lead to smoother outcomes.

Psychological and social adjustment

Adolescence and early adulthood already involve significant identity development, and a chronic condition adds another layer of adjustment. Some young people feel anxious about losing a trusted paediatric team, while others feel relieved to be treated more like adults. Anxiety and low mood are more common in young people with IBD and can influence how symptoms are experienced, so acknowledging this psychological dimension, rather than treating transition as purely logistical, supports better outcomes.

Continuity of medication and monitoring

Many young people are established on biologic therapies (medicines targeting specific parts of the immune system) or immunosuppressants by the time they reach adult services, and interruptions during transition can risk loss of disease control. Clear plans for prescription continuity, blood monitoring schedules, and vaccination status help prevent treatment gaps during handover.

Transition support does not replace medical care, and symptoms during this period do not always indicate active inflammation. Stress, dietary changes, or simply adjusting to a new environment can cause gut symptoms without disease activity, which is why ongoing communication with the clinical team remains essential throughout.

Practical Takeaways

• Start discussing transition with the paediatric team well before the expected move, ideally in the early teenage years.
• Keep a personal record of diagnosis, medications, allergies, and past investigations to bring to adult appointments.
• Practise describing symptoms and treatment history independently, even if a parent is present.
• Learn how to order repeat prescriptions and book appointments before starting adult care.
• Ask the paediatric team whether a formal transition summary or readiness assessment is used locally.
• Flag any anxiety about the change to the healthcare team, as psychological support can be arranged alongside medical care.

Conclusion

Transitioning from paediatric to adult IBD care is a gradual process, not a single appointment, and its success depends on preparation, communication, and steady handover of self-management skills. Done well, it supports continuity of treatment and reduces the risk of care gaps during a period of significant personal change. Young people and parents are encouraged to raise questions early and to see the adult clinic not as a loss of support, but as the next stage of long-term, stable disease management.

References

1. Philpott JR, Kurowski JA. Challenges in transitional care in inflammatory bowel disease: a review of the current literature in transition readiness and outcomes. Inflamm Bowel Dis. 2019;25(1):45-55. doi:10.1093/ibd/izy207
2. Leung Y, Heyman MB, Mahadevan U. Transitioning the adolescent inflammatory bowel disease patient: guidelines for the adult and pediatric gastroenterologist. Inflamm Bowel Dis. 2011;17(10):2169-2173. doi:10.1002/ibd.21576
3. Fu N, Jacobson K, Round A, et al. Transition process from pediatric to adult care in inflammatory bowel disease: assessment of patient readiness. Inflamm Bowel Dis. 2017;23(1):5-10.
4. Goodhand J, Hedin CR, Croft NM, Lindsay JO. Adolescents with IBD: the importance of structured transition care. J Crohns Colitis. 2011;5(6):509-519. doi:10.1016/j.crohns.2011.03.015
5. van Rheenen PF, Aloi M, Biron IA, et al. European Crohn’s and Colitis Organisation topical review on transitional care in inflammatory bowel disease. J Crohns Colitis. 2017;11(9):1032-1038. doi:10.1093/ecco-jcc/jjx010
6. Gray WN, Holbrook E, Morgan PJ, Saeed SA, Denson LA, Hommel KA. Transition readiness skills acquisition in adolescents and young adults with inflammatory bowel disease: findings from integrating assessment into clinical practice. Inflamm Bowel Dis. 2015;21(5):1125-1131.

This article is intended for informational and educational purposes only. It does not constitute medical advice and should not be used as a substitute for professional medical guidance, diagnosis, or treatment.

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