transition: when a young person with IBD moves to adult health care

Transition is the process of handing over medical care from children’s or paediatric services to adult care. The process is an important part of the treatment of children with Crohn’s colitis and all forms of IBD.

Transfer is the formal handover or transfer of care from paediatric to adult health providers.

The transition process includes, but is not limited to, the transfer of care. If transition is done well, it can increase a young person’s ability to work with medical staff in managing their condition.

The transition process starts with learning about transition and how a young person’s hospital manages the handover of care. The transfer of care usually occurs between the ages of 16 and 18, although it can be later depending on circumstances.

Transition should be a gradual process, not a sudden or unexpected jump from one hospital to another, or from one set of medical staff to another. The process should take account of a patient and their parent/carer’s preferences, and should be adaptable to the illness and symptoms.

Transition can seem daunting, but once it begins most young people and families adapt quickly and find that the change is a positive one. Adult health providers are very experienced in caring for people with IBD.

I’ve enjoyed the independence of not having my parents overlooking me all the time

Transition involves important decisions:

  • when will a young person be ready for the transfer of care?
  • what do you need to do to be ready for transition?
  • can a young person remain within the same hospital or would it be better for them to transfer to a different hospital?

During transition you should have help from a young person’s healthcare team with all of these questions. Most young people manage the transition to adult health care with no problems.

 

Key principles of transition for young people with IBD

  • young people with IBD have a right to a managed transition process when moving from paediatric to adult care
  • transition is a process, not an event
  • transition should not compromise a young person’s current care or treatment options
  • transition begins in paediatric services, but adult services are responsible for its successful completion
  • transition works best when it is coordinated and overseen by a named key worker or coordinator, usually the paediatric consultant or specialist nurse
  • transition should be provided by multidisciplinary teams of paediatric and adult health professionals working together
  • a young person and their parents or carers should be involved or represented in planning their transition
  • hospitals should have a transition policy covering all conditions, and also have a specific policy for IBD
  • hospitals should aim continually to review and improve its transition service for the benefit of young people, their families and hospital staff

One of the hardest challenges for young people can be adjusting to the different expectations that doctors have of their adult patients - that they will stand up for themselves and speak for themselves, ask the questions they need to, and be responsible for their own health care. CICRA has a symptom impact tracker designed by young people and health professionals to support them as they move across into adult services.

order our transition support tool today

Managing your IBD and working with your healthcare team will make you feel more positive. With a month to a view, you can use this to track fatigue, pain, side effects from medicines, a toilet tally, your appetite and your mood and feelings. The tracker is designed to give an overview of how you feel physically and mentally. There’s also space to add notes and you can reflect before your appointment on how the previous few months have been.

This free tool is designed to help prepare young people for their transfer to adult healthcare services.

symptom impact tracker