The health care transition from pediatric to adult practitioners is an important process for any young adult, but it is especially critical for cancer survivors.
Typically, this transition takes place sometime between ages 16 and 21. I was diagnosed with aplastic anemia at age 4 and had a bone marrow transplant at age 10. My shift to adult health care began around the time I was 17 and was completed at about age 21. I am now 23 and in full control of my own health care. From my personal experience, here are some critical pieces of advice for making the transition:
1. Start slow and early
It will be much easier to take charge of your health if it’s a gradual process. Start with basic things that are easy to handle, such as calling the pharmacy to refill your medications, or making your own doctor’s appointments.
Don’t worry if you can’t do it on your own the first time –it’s OK to ask for help! As you develop independence, you’ll gain a sense of what your needs and preferences are, which will make life much easier when you have to find new providers and assume full responsibility for your care.
2. Know yourself!
You are the expert on your body, goals, values, and preferences. All of these have a place in your health care. Make choices based on what feels right for you. Don’t be afraid to try out different practitioners until you find a good fit, or make a choice that’s different from those you made in the past. And when something’s not right—speak up!
3. Know your history
As a survivor of a serious childhood illness, you come to adult health care with a medical history that is different from most of your peers. It is essential that you know your own history so you can participate actively in your care.
Sometimes, learning about your history can feel like a huge burden or bring up difficult memories and emotions. If you need to, take it slow as you collect information, and consider seeking support from a trained professional.
One of the most helpful tools I developed is what I call my “medical resume,” a one-page sheet that summarizes my entire medical history and current medical information, along with contact information for my past and present medical practitioners and myself. I give it to any new practitioner I see, along with their intake paperwork. If you decide to create a medical resume, consult with your doctors to understand what information to include.
Remember that when you move from one health care center to another, you will need to take your medical record with you. Call the office and ask for a copy of your record, and mention that you will be transferring to another provider. You may need to pick up a physical copy of your record or you may have access to your records via an online portal.
4. Have a team and a plan
Think carefully about the pediatric practitioners you have and what kind of care you will need as an adult. Sometimes your current practitioners work in hospitals or clinics with adult programs. You also may want to look for a survivorship clinic that can help manage follow-up care and screenings for late effects of your treatment. Build a team that meets all of your needs.
You also need a plan for the process of transitioning. Which providers will you transition first? What responsibilities will you take over and when? How will you get health insurance? Thinking through questions like these will help simplify the transition process and ensure nothing falls through the cracks.
5. This might be hard on your parents or guardians
The adults in your life spent a lot of time and energy making sure you got the best possible care, and they feel responsible for you and your health. Try to be patient if they seem reluctant to “let go.” Explain why it is important for you to take these steps and have age-appropriate care. One of the best ways to help them through this transition is to demonstrate that you have the skills to take charge of your care, or are working on developing them. Talk about expectations so you both know how to handle these health care decisions and your transition.
By Catherine MacLean
For more resources on healthcare transitions visit: gottransition.org. You can also visit Dana-Farber’s childhood and adult survivorship websites for more information. I also helped the Aplastic Anemia and Myelodysplasia International Foundation adapt this transition checklist that might help you start thinking about the process.