Mann spaziert mit einem Freund

Der Übergang von der Kinder- zur Erwachsenen­versorgung

Transitioning to adult care for beta thalassaemia 

You are on the threshold of becoming an adult. Adulthood also means finding the appropriate healthcare.

Beta thalassaemia is a lifelong condition that starts inchildhood.1 As children with beta thalassaemia get older, they eventually switch from their paediatrician – a children's doctor – to a doctor who mainly treats adults. Entering adulthood now gives you the opportunity to take the management of your condition gradually into your own hands – with the support of your new treatment team and a patient organisation, which can help you take these new steps.

Here, we will tell you about how you can have the smoothest possible transition into adulthood.

Aisha, Betroffene mit Beta-Thalassämie major, in einem Café

Aisha, a patient with beta thalassaemia major, from the United Kingdom

Transitioning to adult care is a new opportunity

You will have noticed that you went through many changes during puberty. Your body changed, you developed new interests, became more independent of your parents and took on more responsibility for yourself. In short, you grew up. For people with beta thalassaemia, this also means that you must slowly but surely transition from child healthcare to adult healthcare. The transition to adult medicine means that you can now decide independently what you want your life with the condition to look like and that you can talk about your condition with your new doctors on a more equal footing. Furthermore, there might be extra medicines that you could not be treated with as a child.

Many medicines are only approved for adults, i.e. people over the age of 18, initially because the first studies of new medicines are usually done in this age group. Approvals for children generally come a while later, when the medicine has been tested in children with the utmost caution and is considered to be safe and effective.

The transition to adult care doesn't happen overnight – it requires good planning and preparation.2

To avoid any information being lost during the switchover from the old to the new treatment teams, it is very important for all involved parties – i.e. your doctors, physiotherapists, dietitians, and psychologists – to network and share information with each other early on.3

With the help of your old and new treatment teams, you will draw up a plan as to how this changeover should happen for you personally.

 

Getting used to adult healthcare

The transition to adult care should be planned with the support of all involved parties. For this reason, everybody must work together and talk to each other. That's a lot to organise. If you need help or you're worried you'll forget something, simply ask a patient organisation there, you will find other people who have gone through this transition themselves and already helped a lot of other beta thalassaemia patients through their own.

    • Your paediatrician should support you and your parents with the switch-over. It is also important that you ask for your medical records so they can be given to your new doctors.
    • Your new adult haematologist (blood doctor)must also be familiar with your medical history. You should then talk with them about the continuation of your treatment.
    • Your familycan also help you with the transition. If you can, bring them on board early, too, as this can also be a new situation for them as well.
    • Der The psychosocial support service can also help you integrate the new adult healthcare into your everyday life.3
    • You can also ask for advice from apatient organisation Simply ask them about the "transition".

      To implement the transition to adult care, a personal transition plan setting out the various stages is helpful. This plan might look something like this:2

      • From 14 years: The transition to adult care is discussed. Additional information on the condition is given and the patient's autonomy in the management of their condition is increased.
      • 16–18 years: The transition to adult care can slowly begin. The current treatment team must start preparing for the transition, and you can begin establishing contact with the new adult treatment team. Your current treatment team might also have recommendations for doctors who have managed patient transitions well in the past
      • From 18 years: Patients are now cared for by their new treatment team. New treatment options may be discussed, and you will be asked whether you need further support (e.g. in education or at work).
        • Join a self-help group for young people with beta thalassaemia. By going through it together, you will make the transition from child care to adult care easier! Ask your paediatrician whether they can recommend a patient organisation in your area, or simply take a look at the Community page here. You will be able to find help there.
        • Do you have trouble remembering your doctor's appointments? Use the calendar and reminder features on your smartphone
        • If you have to go to hospital, a diary might help you – you can record all the medical care you get there. This way, you can write down the most important information about your treatment and how it makes you feel, and you can use this as an aid in discussions with your care team. We have prepared a treatment diary for you that you can use if you wish; click here to download it.

        Tips for dealing with the change in beta thalassaemia care 

        Becoming an adult means that you can make your own decisions about your everyday life and the management of your beta thalassaemia. This means freedom and new options. The transition to adult care can bring lots of big feelings with it. It is completely normal if not all of these feelings are positive. You might find it hard to leave your very first treatment team because you built up a special relationship with your doctors and therapists.2 You might also feel overwhelmed with the switch-over to adult care and the new responsibilities you have as a young adult.4

        The important thing is always to talk about it: Talk about your feelings with both your old team and your new one, and decide together about the pace of your transition and how it should unfold. Make sure, too, to ask a patient organisation This whirlwind of feelings will be nothing new to the members there, as they will have also gone through it themselves.

        Zwei Hände halten ein Herz
        Naziha, Betroffene mit Beta-Thalassämie major, im Gespräch

        Naziha,a patient with beta thalassaemia major, from France

        The following tips might also be helpful:

        • Approach other people, build your confidence, and don't be too hard on yourself.
        • Take some time out of your daily routine to catch your breath and clear your head. These needs are completely normal, and everybody feels overwhelmed sometimes, regardless of whether they have your medical condition.
        • If you need somebody to talk to about all these changes in your life, it can also be helpful to make an appointment with a psychologist. Talk with your treatment team about the possibility of being supported by a psychologist.

        The transition from child care to adult care brings with it a lot of new opportunities, and you will not be on your own! Working closely with your new treatment team and getting in touch with other patients should help you to breeze through the transition as smoothly as possible.

        Information for relatives

        Support your teenager with beta thalassaemia as they go through their transition

        Talk to your child about adult care some time before the switch is planned. Tell them what might change, and listen to them if they have worries or fears.3 These conversations will help your child to prepare for the transition in advance.

        If your child has any doubts, you can discuss these together with their current treatment team or with representatives from a patient organisation .3

        You can also organise meetings with other young patients who have already lived through the transition from child to adult care. They can provide you and your child with valuable information and advice.

        Frau legt ihre Hand auf den Rücken eines Teenagers

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          1. Galanello R, Origa R. Beta-thalassemia. Orphanet J Rare Dis. 2010; 5:11.
          2. Bolton-Maggs PHB. Transition of care from paediatric to adult services in haematology. Arch Dis Child. 2007; 92: 797–801.
          3. Alashkar F, et al. Sichelzellkrankheit – Transition von der Pädiatrie in die Erwachsenenmedizin. Expertenempfehlung, Stand November 2021.
          4. Allemang B, et al. Impact of a transition program with navigator on loss to follow-up, medication adherence, and appointment attendance in hemoglobinopathies United Kingdom Thalassaemia Society. Navigating periods of transitions. Paediatr Blood Cancer. 2019; 66(8): e27781.