Parent information (click here)

Moving from paediatric to adult care

Everyone with Kawasaki Disease will have a slightly different experience, but you'll find you will have things in common with others.

One thing for sure…

Having been looked after by a paediatric team as a child, there’ll come a point when you’ll move on – and be looked after by doctors who specialise in adult care.

A growing number of young people, who have had Kawasaki Disease in the UK, have regular care from hospital doctors – because of heart damage caused by Kawasaki Disease, and sometimes because of other complications too.

For young people who have regular hospital care – you’ll probably have been looked after by a paediatric team, specialising in the care of children, since first getting unwell with Kawasaki Disease. As you reach 16, 18 – or sometimes 20 in some hospitals, you’ll make the move up from your paediatric care team to a new team of doctors that specialise in adult care at your hospital.

Sounds worrying? It wont be! What it means is that your team of doctors will change, and you’ll probably be seen in a different part of the hospital. So – if you’re seen in the ‘children’s clinic’ just now, you might be seen in a cardiology clinic in the hospital when you move to the adult team, instead.

But don’t worry – because this won’t just happen all at once – and it certainly wont happen without you knowing about it beforehand. What a lot of hospitals do is organise appointments where you might be seen by your current paediatric doctor, and your new adult doctor at the same time – at “handover” or “transition” clinics, where your care is handed on to the team of adult doctors. It’s a chance for you to get to know more about any changes, new arrangements and more, as well as ask any questions you might have.


What care and treatment will I receive?

You might want to grab a parent or carer and ask them to look at this page with you if you’re not quite sure whether you had heart damage, or if you did, what sort of problems there were, or perhaps still are.

The UK has guidance for doctors on the care and treatment that young people and adults should have, following Kawasaki Disease. The level of care, medicines and tests that you might need varies depending on how Kawasaki Disease affected you. The UK guidelines set out five different treatment groups for Kawasaki Disease.  For each group, the guidelines show what treatment(s) are needed after your initial recovery from when you first were ill (probably as a baby or young child).

To see what the UK guidelines recommend for you for follow up care, have at look below and see which of the 5 different patient groups you best fit into. Click on your patient group to see the recommended care guidance. If you are unsure about which patient group you are in, your parent/carer or your doctor may be able to help you.


Not sure whether your heart was affected when you had Kawasaki Disease?

Maybe you don’t have all the low-down on when you were first ill. Why not show your parent, carer – or GP this site. Talk to them about your Kawasaki Disease experience and ask them to answer your questions.

Patient Group 1

If you had no heart damage at any stage when you had Kawasaki Disease, you are in Patient Group 1

Click here to see follow up care for Patient Group 1.

Patient Group 2

If you had some heart inflammation, but that disappeared 6-8 weeks after you first were ill with Kawasaki Disease, you are in Patient Group 2.

Click here to see follow up care for Patient Group 2.

Patient Group 3

If you had a small to medium sized coronary artery aneurysm on the major coronary artery, you are in Patient Group 3, regardless of whether that artery then shrank to normal size.

Click here to see follow up care for Patient Group 3.

Patient Group 4

If you have large or giant coronary artery aneurysm(s), or complex aneurysms in the same coronary artery without any clots or other blockages, you are in Patient Group 4.

Click here to see follow up care for Patient Group 4.

Patient Group 5

If you have a clot or other blockage in a coronary artery, you are in Patient Group 5.

Click here to see follow up care for Patient Group 5.

What to expect when you move from paediatric care to adult care

The video below shows two of our scientific advisors, Dr Tom Johnson and Professor Robert Tulloh – brilliant doctors who are experts in Kawasaki Disease – talk about moving from paediatric care to adult care. We hope the videos answer some of your questions. If you do have any questions left unanswered just get in touch and we’ll try our best to help.