Preparing for Adult Care
“Early on, my mom forced me to take more control of my care, so when I transitioned to adult care, my doctor was actually pretty impressed with how ready I was!” - Brian Ward, National Council of College Leaders
Because IBD is a chronic disease, it is imperative to stay in touch with a doctor. Unfortunately, a patient may not always stay under the care of the same doctor for his/her entire life. Transitioning to adult care can often be daunting, with concerns such as “will the new adult doctor be like my pediatric gastroenterologist?” and “will they ask me hard questions about my disease? What if I do not understand what they are saying?”
While there are many differences between pediatrics and adult care from a clinical perspective, many issues that young adult IBD patients may face are ones that revolve around skills such as independence, and communication. Intentionally preparing for this transition can alleviate anxiety and can get you the care you need sooner. Below are tips on how to ask good questions of the new adult doctor as well as how to choose this new provider.
Start small and work from there
One of the best things you can do to help the transition is to begin taking control of during appointment with your doctors. Be the one to answer questions. Try to memorize your medication list. Try to articulate what you are feeling as best you can before someone else helps you. Ask questions directly to the doctor whenever you can: they will be happy to answer, even if you feel the question is silly or redundant. Little things like can slowly build into the main goal: becoming your own health advocate!
When is it time?
Most pediatric care facilities have a policy about transitioning to adult care, usually finishing the process around 18 or 21 years old. How can you tell when you are ready? Well, to be honest, you might never be completely, but a great test would be to try to tell your story. When were you diagnosed, what medications have you been on and how did they make you feel? What medications are you taking now?
Be honest with yourself about your effort. How much initiative are you already taking in your own care? Once you understand where you are on the path towards independence, you can strive toward things that help you improve.
What are good things to practice?
It takes some work to be a diligent, but these are some things to keep in mind:
- Preparation: Don’t wait for until the last minute. Schedule your appointments as soon as possible and show up on time, or early if it's the first appointment. Write down questions and bring them to the doctor.
- Self-empowerment: It is important to speak up for yourself. Ask questions about new medications (for example: what are the side-effects?). Never say you are doing “fine” when there not feeling so great. You should also know information about your history, such as when you were diagnosed, and important changes you've been through in your disease journey. You should also try to be open with your doctor about topics like sexuality or alcohol and drugs, and trust that the nurses and doctors will be professional about these questions and offer good advice.
- Participate in decision making: It is OK to let your doctor know that you want more information about a topic before making any decisions around your care. Decisions about your care should be a collaboration between you and your doctor. The goal is to search for your best treatment plan. Sometimes you may need to make the decision to get a second opinion, or select another doctor if you are not comfortable with the doctor you have.Adult patients search for the best treatment for them. Adult patients know that it is OK to change doctors, or to search for a doctor that they get along with.
Helpful tips as you prepare for adult care:
- Start early on the little things, like answering questions directly to your nurse, doctor, or healthcare professional.
- Participate in scheduling your appointments. Try sitting in on a call with your parent/guardian, or even making the call yourself with their supervision.
- Memorize and practice telling your story, medication list, and common symptoms you have.
- You can decide who you get along with-- the first doctor does not need to be the one you see forever, and they will be OK with your honestly and participation in transitioning you if needed.