Transitioning to adult care

Getting ready

Moving to a new adult health-care team can bring mixed emotions, including excitement, fear, relief or sadness. You have likely become familiar with the hospital and staff, and you have developed a routine around your health care. When making the switch to adult care, it can help if you know more about how things will work as an adult patient.

A time for transition

What is transition?

Transition means moving from one life stage to another. It involves change and adapting to change, which can be exciting but sometimes scary. The best way to deal with any transition is to plan ahead and be prepared. Preparing for a transition involves learning, in advance, the skills that you will need to succeed in a new life stage.

During your teen years, you will go through a number of transitions. You will transition from high school to higher education, or to the world of work. You will also experience health-specific transitions; for example, being on treatment to being off treatment, being off treatment to attending follow-up care, stopping one medication to take another, etc.

When will I transition to adult care?

One very important transition will be the move from receiving your health care in a paediatric centre to receiving it in either an adult centre or from your primary-care provider. This move is known as a health-care transition and usually happens around the time that you turn 18, when you are legally considered an adult. There is no set age for this transition; so if you are still in active treatment when you turn 18, you may be able to finish your treatment with your paediatric team. Your health-care team can talk to you about the health-care transition and help you get prepared.

You will still get care after you no longer go to your paediatric centre; it will just be in an adult hospital, adult clinic or from a primary-care provider instead. Your paediatric health-care team will recommend and refer you to where you should be going to continue your care, and they will arrange for the transfer.

The new health-care providers you see will be used to working mostly with adults. Adult hospitals are used to treating patients who are already familiar with managing their own care, so it is very helpful by this point if you know the basic information about your health history, such as your diagnosis and any ongoing health issues that you may be experiencing. At first, your adult health-care provider may need to do some tests that were already done at your paediatric clinic. This is necessary so that they can get to know you and become familiar with your specific health-care needs.

Why do I have to transition to adult care?

Your paediatric health-care team is made up of doctors who specialize in children’s and teens’ health. As you become an adult, your health-care needs change and will be better met in a hospital or clinic for adults, or in a primary-care provider’s office. Continuing your care is very important because you may need special follow-up care as you continue to get older.

Advice from other teens

It can take time to develop confidence in a new health-care team, especially if the environment is different than what you are used to. Try to keep an open mind. Remember that different does not mean worse!

What is an adult care centre like?

Like some other teenagers, you may be excited about your move to adult care. Or you may be nervous to leave the paediatric team that you have gotten to know so well. Both reactions are normal. Being prepared and knowing what to expect can make your transition smoother.

• Adult centres usually do not have the same bright colours on the walls, or games and things to do in the waiting rooms.
• Most of the other patients in adult care will be much older than you.
• If you need to stay in the hospital, you probably won’t have your own room, unless your health insurance can pay for it.
• If you are staying overnight, prepare ahead and make sure you bring along things to entertain yourself, especially if you know in advance that you are going to be admitted. Remember to bring a charger for your devices.

What are the similarities between paediatric and adult care?

Both paediatric care and adult care are focused on your health. Helping you stay as healthy as possible is the ultimate goal.

What’s the main difference?

The main difference is in the focus of care:

• Paediatric care is family-centred. Your family may have been with you during appointments and involved in making decisions about your care.
• Adult care is patient-centred. This means you (the patient) get to take a lead role in making decisions and managing your health. You get to be empowered to take care of yourself! While this may be a bit overwhelming at first, it’s a great opportunity to start gaining some independence.

Your health-care provider will expect to hear from you and will ask you questions directly. You may be expected to attend appointments on your own, but you can request that a family member or close friend come in with you for support.

How can I prepare for the transition?

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.

Transition takes time, so it is best to start as early as possible. Your health-care team will help you. You can prepare for the transition by:

• getting to know your treatment history and being able to give a three-sentence summary of your health
• practicing self-monitoring (paying attention to your body) and describing your symptoms in appointments
• managing your medications, scheduling appointments, and making healthy lifestyle choices
• answering questions in appointments; being involved in making decisions; and, over time, spending part or all of the appointment alone with your health-care provider
• starting to learn about your health insurance and the types of treatments it covers

Many teenagers and young adults feel better knowing they are in control. Learning the skills to help with this process can take time; but, in the end, these skills can help you achieve your goals for the future.

Some teenagers find it easier to have a checklist of tasks or goals to help prepare for their health-care transition. To make your transition a bit smoother, fill out a transition readiness checklist.

Your three-sentence health summary

In an adult centre, you will be expected to describe your health history in a quick phrase (about three sentences long). It can help to have some practice with this.

Your three-sentence health summary includes the following information.

• Sentence 1: Age, diagnosis, and brief health history
• Sentence 2: Your treatment plan thus far
• Sentence 3: Questions or concerns to raise during the visit

Write out these three sentences and practice with the health-care providers you see most often. They will help make sure you’ve got all the details correct. If they suggest adding or changing anything, be sure to write these suggestions down. After you give your summary, expect your health-care provider to ask you more questions. This does not mean that you have missed information, just that the person is being thorough.

If your parent(s) or caregiver usually does the talking during appointments, let them know before the appointment that you want to practice giving your health summary and answering questions by yourself.

Here is an example of a health summary:

Self-monitoring

Even if you are no longer receiving treatment in adult care, it is important to continue to pay attention to your body. You are often the first person to notice when something changes. When you practise self-monitoring, you have a better chance of noticing a problem sooner. This means that you and/or your parents can then share the problem with your health-care team.

Be in charge of your medications

• Keep a list with names and dosage amounts of your medications, including vitamins, supplements and over-the-counter medications.
• If you are put on a new medication, write it down on the same list as your other medications.
• Before your appointment, check your prescriptions for the number of repeats. If you only have a few repeats, be sure to ask your doctor for a refill prescription.

Making and keeping appointments

In adult care, the responsibility to make and keep appointments lies with you, the patient.

• Make sure you keep track of your appointments (phone, agenda, calendar, etc). If you miss an appointment it will be your responsibility to call the clinic and rebook. This is different from many paediatric clinics, where they will call you or your family if you miss an appointment.
• If you realize an appointment time is not convenient for you, it is your responsibility to book a new appointment time.
• Make a list of all the team members at the clinics you visit. Know their names, their roles, and how to contact them.
• Ask who is in charge of scheduling appointments. Talk to this person if there is more than one health-care provider that you would like to see on the same day.
• Think about how you will be getting to your appointments and give yourself enough travel time. For example, find out how you will get there, and where the building and clinic is located.

It can be helpful to consult this appointment checklist before every appointment.

Tips for talking with your doctor

Your doctors, nurses and social workers have a very good idea of what will help with your transition to the adult health-care system. Talking to these people can help prepare you for this change. Sometimes, it can be hard to talk with them, especially if your parents always did the talking for you.

Here are a few tips to help you better communicate with your doctor and health-care team:

• Ask questions! There’s no such thing as a stupid question.
• When you do not understand something, ask to have it explained to you again.
• When you need help, ask!
• Be honest and say what you think.
• Write down what was said during an appointment so you will remember what happened.
• If you have questions after your appointment, phone your doctor or nurse to make sure your questions are answered.
• Start your visit without your parents in the room. This way, if you have a private matter to discuss, you can do it then and you won’t have to ask them to leave the room.
• Ask your doctor to explain everything to you. Make sure that you understand all the benefits and possible complications of your treatment plan.
• Remember: This is your body. Make sure that you are comfortable with the plan. If you have any concerns, tell your nurse or doctor. This will help them to find the best treatment plan that works for you.
• Follow-up after two weeks if you have not heard about things you discussed during your visit: test results, referrals, or new tests bookings.

Health insurance

Your parents have probably paid for your medicines either through their health insurance or by filling in forms that will help get government coverage. As you get older, you will need to consider how you will become responsible for paying for your own medications. For example, if your parents have insurance and you stay in school, your medicines will usually be covered only until you are 25 or are finished full-time studies, whichever happens first.

There are four types of drug insurance:

1. Private insurance: This might be available through your own employment, through your enrollment in post-secondary education, or through your parent’s work if you are a student until you are 25 years of age.
2. Trillium Drug Insurance Program: This is a program of the Ontario Government that pays for medications. Your contribution is variable, depending on how much money you make. You will need to file income tax forms every year to stay qualified for this.
3. Ontario Drug Benefits through Ontario Disability Support Program (ODSP) or Ontario Works (OW). If you receive social assistance, talk to your Ministry of Community and Social Services case worker.
4. Temporary, emergency programs: There is always a way to pay for medications through drug insurance or temporary programs, while you’re waiting to get long-term insurance.

If you need to apply for government funding for medications, you will need to show you qualify every year by filing an annual income tax return. It is a good idea to get familiar with income tax returns, so start doing these when you are 16.

This website from the Canadian Revenue Agency has more information about how to complete your tax return. You can also talk to your parents about how to file your income tax.

Transition programs

Some hospitals have special staff, clinics or programs that help teenagers develop the skills they need to prepare for a health-care transition. Your paediatric team may be able to arrange for you to meet your new adult provider, or have a tour of the clinic, before your first appointment. You may also be able to arrange for a tour of your new clinic or hospital yourself.

Continued care is important

Once you turn 18, you can no longer be admitted to paediatric care overnight or use the emergency services. Talk to your health-care team about the best place to go for urgent care or emergencies while making your transition.

People with chronic health conditions stay healthier if they have lifelong follow up. It is important to keep in contact with your primary-care provider regularly (at least once a year—even when you are healthy).

You may also have questions about becoming an adult with a chronic condition.

Some common concerns are:

• Relationships and sex
• Family planning: contraception, planning a healthy pregnancy/fathering a child, parenting options
• Health insurance (to pay for medications and personal care supplies)
• Post-secondary education
• Working
• Managing finances (income supports, funding)
• Moving out on your own
• Where to get community supports and services

These questions and concerns are normal. Discuss them with your health-care team.

Final tips for transitioning to adult care

Be GLADD

• Give information — Know about your medical history and current medications. Tell your team what works best for you.
• Listen to the suggestions — Your new team knows a lot about adult health care.
• Ask questions — Write questions down before your visit so you don’t forget. If you don’t understand something, ask for an explanation. There are no silly questions. Get all the information you need.
• Decide on a plan — Choose a plan that is good for your health and works best with your lifestyle—for school, work and socially.
• Do it — Get involved with your care! Take your medications and attend your medical appointments.