Transition: From paediatric to adult rheumatology care

As the parent of a child with arthritis you will know (and often know very well) the children’s hospital team looking after your child. In the UK, medicine is split into paediatrics caring for children (usually up to the ages of 16-18) and adult medicine where patients are seen from 16 upwards. At some point your child will leave paediatric services and meet the adult rheumatology team in a process called transition. This is something that both parents and children can feel a bit worried about, but with planning and information it can be a really positive step! Below are some facts about transition and questions which you can ask your rheumatology team to help you understand and plan for the process.

What is transition?

The technical definition ‘transition” is the young person-centred process of addressing the ‘medical, psychosocial and educational/vocational needs’ as young people with long term conditions move from child-to-adult-centred care.  In practice, transition is the process of planning when your child is ready to transfer from children’s to adult rheumatology services, understanding local arrangements and making the move at the RIGHT time for your child. Children make other transitions such as that from primary to secondary school; usually these are anticipated, planned, involve visits and taster days and are seen as positive – medical transition should be no different!

When does transition start?

Planning transition should start early and should certainly be a topic of conversation in clinic appointments from early teenage years. All children are individuals and exactly when transition-planning starts will vary from person to person and from service to service. A really useful thing parents can do is ask their rheumatology teams what local arrangements for transition are and involve their children in this conversation. 

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 the young adult wants 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. 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 will eventually become their patient.  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.

Where can I get more information about transition?

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

References available on request 

By Dr Rachel Tattersall (adolescent rheumatologist) and Dr Brian Davidson (adult rheumatologist)