Resource

Transition

Transition, in JIA, refers to the transition of a child from paediatric to adult rheumatology care. The age that this happens will vary depending on when a child is ready to make steps toward having more control over their healthcare.

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Transition | The Basics

This short animation covers the topic of “transitioning from paediatric rheumatology to adult rheumatology care.”

How will I know my child is ready for transition?

Part of growing up and adolescent development is the process where children develop their own identity and become more independent. The physical changes of puberty are relatively obvious but the brain development in adolescence goes on into the mid-twenties. Young people vary tremendously in their readiness for transition and opening discussion about the subject early and working with your rheumatology team means your child can start to make decisions about their care when they are ready.

As they get older there will be things that adolescents and young adults want to discuss privately, and one difference young people will experience in adult services is being seen in clinic alone rather than always being with you. For this reason, your child will be given the chance to see the rheumatology team separately from you. This can sometimes cause parents to feel anxious, but it is important to allow time for this discussion as issues such as alcohol, drugs and unplanned pregnancy are especially important in young adults with medical conditions. Allowing your children to ‘practise’ being seen alone in paediatrics will help them develop the skills they need to direct their own care. 

What is the best way to ‘do’ transition?

There is no one-size-fits-all for transition. The basic principles are that it should be planned as early as possible and that transfer should be at a stable time in terms of disease control and life events. Ideally, children and young people should meet the adult rheumatology team with their paediatric rheumatology team in joint clinics before they transfer their care. This allows you and your child to get to know the team that will become increasingly involved as your child becomes a young adult. It also allows the adult rheumatology team to get to know your child who they will eventually be caring for. In smaller units, these joint clinics may not be possible and other pathways may exist. For example, your paediatric rheumatology nurse could attend your first adult appointment with you after the doctors have discussed your medical care and handed over a summary. Whichever way transition happens locally, you can help your child by asking about arrangements and plans and supporting them through the process.

What are some of the ‘challenges’?

Transition | Problem Solving

It is crucial that adolescents and young people are given the opportunity to learn how to problem-solve when transitioning from paediatric to adult rheumatology care.

There is a great deal of regional variation in what is being offered in preparing young people for the move from paediatric rheumatology to adult rheumatology services. Some children will have been managed through shared care between the specialist paediatric team and a local adult rheumatologist, meaning that they know the adult team, which can smooth the transition path. Others may have been seen by a specialist paediatric rheumatology team in a specialist centre and need to meet a new adult rheumatologist and their healthcare professional team for their transition. Whatever your local service offers, by talking to your child/teenager’s paediatric rheumatology team you can find out exactly how their transition will be managed and where they will receive their adult services. This conversation will help you to perhaps question your team if the service is not meeting best practice guidelines. Early discussions will help to reduce any anxiety you and/or your teenager may be experiencing about the transition process. 

Where can I get more information about transition?

Your rheumatology team will be a great source of information about transition in your area.