Hemophilia: Switching from paediatric care to adult care

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Teens living with hemophilia can learn what to expect when making the inevitable transition from paediatric care to adult care.

During your transition, you may transfer from your paediatric centre to an adult centre or work with a new comprehensive care team (CCT). This depends on how your current paediatric centre is structured.

  • Sometimes paediatric centres may have an adult clinic in the same location, in which case only your CCT will change.
  • In other paediatric centres, teens may continue under the same CCT.

Regardless of whether you change centres or CCTs, you inevitably transition from an adolescent to an adult with hemophilia. These changes can seem big at first. But wherever you continue to receive care, your CCT has your best interests at heart and will continue to give you the highest standard of care available.

Where does transition fit in?

Living with hemophilia means adjusting to an additional life change: learning to take care of your hemophilia on your own. This change is not immediate and can take several months or years. During this transition, you learn to become personally responsible for managing your hemophilia.

As the caregiving role shifts from your parents to you, you will devote more time to your hemophilia. Some teens feel that this new responsibility disrupts their life. They do not know how to explain their hemophilia to others and are afraid of not being accepted. They end up resenting the process of transition, ignoring their responsibilities, symptoms, and treatment - putting their health at risk. Not being serious about your hemophilia care when you are a teen may lead to serious bleeds that can have long term effects on your health. This online program, along with your parents and CCT, are here to guide and help you through every step of the process. We know that you are capable of managing your hemophilia. What’s important is that you learn everything you need to know about your hemophilia and feel comfortable managing it.

Parents need time adjusting to your transition

Your family has been a part of your hemophilia care for many years, so the thought of letting you care for yourself may make them anxious. If you receive factor at home, your parents probably helped give you infusions and may still help you with this process now. As you get older, you begin to take on more responsibilities like booking appointments on your own. Your growing independence may make some parents feel nervous and over protective. Although you may find this frustrating, try to be patient and give them time to feel more comfortable with your new responsibilities. You are not going to transition overnight. In the same way, your parents need time to accept your independence.

Going to an adult centre will help you build confidence when making decisions

Making decisions is a natural part of getting older, whether you are choosing what you want to study, making lifestyle choices, or trying to resolve issues in the workplace. Making decisions requires confidence, which is an essential life-skill. Your experience in an adult centre gives you the opportunity to trust your own expertise, as you make more decisions about your hemophilia care and management. In the long-run, you will be better equipped to handle any of life’s decisions that may come your way.

Paediatric vs. adult care: Common myths

Making the switch to adult care can bring mixed emotions, including excitement, fear, relief or sadness. Some teens may feel nervous about switching to an adult centre because of rumours they may have heard from others surrounding these centres. To help you see how these rumours are usually exaggerated, let’s look at some common myths about adult care.

"Adult CCTs do not really care about their patients."

Initially, it may take some time to get to know your new CCT in the adult centre. Your new CCT is just as devoted to your care as your paediatric CCT. They know the ups and downs of hemophilia and are genuinely there to support you.

"Appointments in an adult care centre are rushed and you cannot ask your CCT any questions."

In a paediatric setting, your CCT spends time explaining your hemophilia care to both you and your parents. In an adult centre, your appointments may be shorter and less frequent, but should not be rushed. Rather, your visits are efficient. Part of taking more responsibility over your health means being a proactive patient. As you take on more responsibility for your care, you develop a greater understanding of hemophilia and can communicate your concerns right away. Take initiative in asking your doctor questions whenever you have any concerns.

What will change when I transition to adult care?

A major part of your transition is learning to take more responsibility over your own health. Some of these responsibilities include:

  • recognizing when bleeds are occurring or when there is risk for a bleed
  • recognizing when a bleed requires emergency care
  • following your treatment plan
  • performing self-infusions
  • ordering your own factor
  • planning ahead for supplies and factor
  • booking and attending your own appointments
  • communicating your condition to health-care professionals and loved ones
  • asking questions about any of your concerns.

Remember, transition is not an immediate change but a process. You do not have to take on all of these responsibilities at once. It is better to work on one skill at a time, continuing to add more responsibilities when you feel ready. Your parents and CCT are still there to provide you with support and guidance.

Moving onto adult care is an exciting time in your life. There are lots of advantages to being cared for as an adult:

  • Gaining more independence and control over decisions surrounding your care.
  • Attending shorter appointments, which means missing less school or work, and more free time to spend with friends.
  • Booking your own appointments according to your schedule and convenience.
  • Being recognized as a competent individual who understands your hemophilia and can manage their symptoms and treatments.
  • Having access to health-care professionals that have more resources and expertise in treating individuals with hemophilia in your age group.

You are the most important part of the team

You are the best person to look after your own interests. You need to learn how to be in control of your health and personal life goals. If you know what you want to do with your life, your health-care team can help direct you to the best treatment plans to meet your goals.

Last updated: March 13th 2019