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Making the Switch from Paediatric Cardiology to Adult Congenital Cardiology

Switching from Paediatric Cardiology to Adult Congenital Cardiology is a Big Step
The Information in this Section will Help to make this Transition as Smooth as Possible

Most congenital heart disease is diagnosed in early childhood. This means that you will be very familiar with seeing your team in the children’s clinic over many years and the idea of transferring to the adult clinic can be daunting.

Transition is the process of getting prepared for this change, but it’s about a lot more than just the transfer from paediatric to adult care. Transition is also about getting a young person ready to be responsible for their own health and getting parents ready to gradually take a back seat. This doesn’t happen overnight and in fact transition ideally takes place over a period of several years.

Research has shown that 26% of young people will lose contact with their cardiology services over the transition years, and this can happen for all sorts of reasons. To help you understand your condition, continuing to work with your cardiac team can help you learn to live with your congenital heart.  

Your team can help you prepare for transition, and there are also plenty of resources available online to help out. Look at this list of FAQs – it will help to show the difference between transfer and transition. The links below will take you to some of the transition resources on this site and at the bottom are links to other transition resources available online.

Transferring from Paediatrics
FAQs

This varies a bit, but usually around 16 years of age

Young people with congenital heart conditions will be seen by an adult cardiology team. In Auckland there is an Adult Congenital Cardiology team (the ACHD team) that sees congenital heart patients. Outside of Auckland you will usually be seen by a specific cardiologist who has a special interest and expertise in ACHD.

Yes, you do. Paediatric services are great for looking after babies and children, but once you become a young adult you will find that the adult services are the best people to look after you. It’s often hard to leave the team that you know so well, but you’ll soon get to know the adult team and will feel comfortable with them too.

The obvious things are that you will be seen at an adult clinic and if you need to be admitted to hospital you will be on an adult ward. This is quite different from the children’s ward.

Also, as you become a young adult you will need to take responsibility for your own health care. This means that in time you will see the doctors and nurses by yourself, without your parents. You will need to learn about your heart condition and your medications and you will need to talk to the team and make decisions for yourself. The transition program will help you get the hang of these things.

Transitioning to Adult Care
FAQs

We usually start talking about transferring to adult services a few years before you actually make the switch. It’s good for you to have plenty of time to think about this and to prepare for the change.

In your teenage years there are lots of changes going on in your life. When you are younger you are completely dependent on your parents, they are in charge and they make the decisions. When you are a young adult you are responsible for yourself – you look after yourself and you make decisions for yourself. This is true for all young people.

The same is true for your health. You need to gradually shift from the situation where your parents look after this, to the stage when you are able to take responsibility for your own health and look after it yourself. You need to understand your health issues and make decisions with the help of your cardiology team.

It’s important to understand that these changes don’t happen overnight. This is a gradual process and this is why you need plenty of time to be prepared.

We will give you resources that help you to learn about your heart condition, your medications and how your heart condition affects your life in general. Your medical team can help you out and there are people you can talk to so that you can find out more if you need to.

We will talk about other important parts of your life that might be relevant to your heart condition. Things like traveling and sport, what jobs you might like to do, getting a driving license. We’ll also talk about alcohol and sex (don’t worry, it’s embarrassing for us too!)

You need to gradually get used to talking about your heart condition and taking responsibility for your own health.

Getting Started With Transition
Looking After Your Own Health
3 Sentence Health Summary
Adult Healthcare – What’s different?
Learn about Confidentiality
Who is Available to Help me Out?
Transition Advice For Congenital Heart Parents
A Personal Safety Plan for Rangatahi/Youth
Employment Advice