The transition to adult care
When young people with sickle cell disease become adults, they switch from child care to adult care.
Sickle cell disease is a lifelong disease which generally starts during childhood.1,2 When young people with sickle cell disease become adults, they will switch, at some point, from their paediatrician to a doctor for adults who is a specialist in blood diseases.1-3
We would like to give you some suggestions for how you can make this transition from a paediatrician to an adult doctor as smooth as possible. In addition, we have some tips up our sleeve for getting used to your new treatment team quickly and managing your disease independently as an adult.
Challenges posed by the transition
Puberty is an exciting phase of life, in which many changes occur. Your body undergoes a genuine transformation.3 Your emotions and your view of the world and yourself can change drastically - as well as many other things besides.3
If you have grown up with sickle cell disease, your disease may also change as you are becoming an adult.1-3 It is important to be familiar with the complications that may occur for the first time during this phase, as your disease may worsen as these changes occur.1-3
It may be that you have to delay certain things sometimes as a result of your disease – meeting your friends, for example. This can be very frustrating. For this reason, it can be even more important that you actively manage the treatment of your sickle cell disease so that you maintain good levels of mental health and fitness and have more freedom in the long term.
Becoming an adult with sickle cell disease
Your treatment team as well as other people with your disease will certainly be happy to offer you support and help you to get the most out of adult health care. Ask them any questions that you have.
The following tips may also help you:
- Join a self-help group for young people with sickle cell disease. A patient organisation may be able to recommend you a group of this kind in your region. By going through it together, you will make the transition from child care to adult care easier!
- You have been living with sickle cell disease for a few years now and you have become an expert with regard to your own symptoms. But there is still more to learn about the causes of sickle cell disease and the various options for managing the disease. This website can help you. You can also find links to organisations that can give you more information on our Community page.
- If you sometimes forget appointments with your doctor, your smartphone may be the solution, as you can set an automatic reminder for all appointments.
- If you have to go to hospital, it might help you to record all your medical care and to have this information with you. This means that the most important information regarding your treatment is directly available for the doctors at the hospital. Our treatment diary, which is available to download, is also very useful in this respect.
Become part of the Community.
How parents can support their teenagers with the transition:
If you have a teenage child with sickle cell disease, it is advised that you draw up a treatment plan together with their doctor and that you give your child time to make the transition.1,3 In addition, talking to other people of the same age with sickle cell disease may help your teenager to manage this transition more effectively.1,3
As an example, this transition plan might include the following steps:3,4
- Gain a deeper understanding of your own disease
- Talk about the upcoming transition, reinforce the sentiment of taking responsibility for oneself
- Make contact with the future haematologist
- Attend appointments at which both the previous haematologist and the new haematologist are present without being accompanied by parents
- Transition to adult health care, receive information about possible supporting measures in education and at work
You can also organise meetings with other young people who have already completed the transition from child to adult care. They will be able to provide you and your child with helpful information and tips.
Additional support
You are not alone in making the transition from child to adult care!
Working closely with your new treatment team and getting in touch with other patients can help you to make the transition as smooth as possible.
- Top tips for self-management
- Your wellbeing diary
- Set targets that work for you
- Get the most out of your medical appointments
