Transition is a term used to describe the preparation to move from a paediatric to an adult health-care setting. To help you transition into adult health care, preparation should begin early on while you are still being cared for in a paediatric setting. The actual transfer into adult health care usually happens around the time of your 18th birthday or when you are leaving high school. As you become a young adult, you will outgrow the expertise of a children’s hospital. At this time, you will need to find a health-care provider who can care for your unique adult needs. This is especially important if you have a chronic condition like JIA, because you may need ongoing treatment through your adult life.
Your paediatric rheumatology team will begin talking to you about transition during your early teenage years. You will eventually be completely responsible for your health care. Your paediatric rheumatology team wants to teach you how to successfully manage your care when you move on.
Some young people with JIA worry about leaving their paediatric health-care team. Others are excited and look forward to a change. Both reactions are normal. Whichever way you feel, being well prepared and knowing what to expect from the adult system can help make your move a smooth one.
Differences between paediatric and adult health centres
There are a few differences between paediatric and adult health centres. You will need to be more independent as you get older. You will need to depend less on your parents or guardians and do more things on your own. You should know about your medical condition and be able to explain it to doctors and nurses. You should also be able to recognize when you need medical help, organize your medications, and arrange medical appointments.
Making the transition easier
To make the transition a bit easier, some young people find it helpful to have a checklist of tasks or goals. Have a look at this transition readiness checklist. You might find it really helpful!
Your health passport
Another great way to make things easier is to create your own “health passport.” Check out this link: www.sickkids.on.ca/myhealthpassport.
This will help you to develop your own wallet-sized card that provides your personal medical information. Ask one of your nurses or doctors to help you with the details. Your health passport can be used when you go to a new doctor or if you have to visit an emergency room.
Three-sentence health summary
Before you are ready to transfer to an adult health-care centre, you should be able to summarize your health history in three to four sentences. Health-care providers may interrupt patients who tell a long, drawn-out story. By being able to summarize your history quickly, your new doctor will know that you understand your health. They will also know that you can focus on what is important. Your new doctor will most likely still ask you some questions after you give your summary. This doesn't mean that you have missed out on important information. It’s just your doctor’s way of making sure that they understand everything that you have told them and that they have all the information they need to give you the best possible care.
Your health summary should include:
- your diagnosis: JIA and the specific subtype
- how long you have had JIA
- other medical conditions
- medications you have taken in the past, and are currently taking including dosages
- allergies to medications, any past medication reactions or reasons for stopping medications
- eye health
- any past joint injections
- any past surgery or hospitalizations for JIA problems
- complications of JIA
- other medical problems.
Here is an example of a health summary:
“I have had polyarticular JIA since I was nine years old and uveitis in both eyes since age 10. My medications include methotrexate 20 mg injection per week, naproxen 500 mg twice a day, folic acid 1 mg daily and prednisone eye drops once daily. I have had joint injections in both of my knees twice;. I was hospitalized at age 15 for cataract surgery. I’m allergic to penicillin.”
Think about what your three-sentence health summary would be.
Tips for transitioning
Here are some tips to make it easier for you to move to an adult health centre.
Early teens (12 to 14 years)
- Learn to describe the type of JIA you have.
- Learn about your medications and treatments.
- Begin to ask questions at appointments.
- Take on responsibilities at home including chores and helping out with other family activities.
- Be informed about your body, and make sure you have information about puberty and sexual health. You can find out more through books, pamphlets, your parents, your school counselor and your health-care provider.
- Learn how smoking, alcohol and drugs can affect your health.
- At the start of your clinic visit, meet with your nurses and doctors alone. This will help you to get used to talking on your own with doctors and nurses. Invite the adult accompanying you in for the rest of the visit.
Mid-teens (15 to 16 years)
- Find out about support groups including online groups and arthritis associations that can provide you with peer support. One useful association is The Arthritis Society. You will learn more about what The Arthritis Society can offer later in this module.
- Talk to a health-care professional about your sexual and reproductive health, and how it is affected by your medical condition.
- Continue to learn about your medication. Keep track of when you need your prescriptions refilled.
- Discuss future goals such as planning your post-secondary education and your career.
- Meet with your health-care provider alone for part of your clinic visits. Your parents can join in for the discussion of the treatment plan.
- With the help of your paediatric rheumatology team, start looking for a specialist who can provide your medical care when you become an adult.
Late teens (17 to 21 years)
- Start booking your own medical appointments. Keep track of the doctors and other health-care providers that you need to see. You should know your doctor’s name and telephone number.
- Make sure you know your family doctor and when you should be seeing them. If you are not comfortable with the family doctor you have, try to find one who you like and trust!
- Once you know who your new doctor or health-care team will be, figure out the details. These include where the clinic or office is located and how you are going to get to appointments. Also find out which health-care providers you should contact if there is an emergency before your first appointment.
- Continue to talk to your health-care professional about your sexual and reproductive health and how it is affected by your medical condition.
- Start looking into employment or educational options and health-care benefits.
Tips for talking with your doctor
Your doctors, nurses and social workers have a really 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.
