What to expect?
In the transition phase, your treatment transfers from pediatric to adult care. Processes can differ between countries and even between cities. Usually transition happens when a patient is 16-18 years old. Patients are guided to adult care’s habits and independence.
Why is it important?
After you are transferred to adult care, you take the responsibility to respect your treatment schedule, appointments and medications. Your doctor may not be the same you are used to in a pediatric clinic. Goal of a process is that the patient is completely independent. That doesn’t mean that the patient is completely alone. Team of treatment is always there to give you information and help.
How can you manage it: [1]
Since this might be a difficult time for you, here are some advices on how to manage things better.
-Understand your diagnosis, the extent of your disease, and past surgeries and complications.
-Your medicine by name, what dosage you are using, how to use and the possible side effects of your medicine and how to prepare for them.
-Where your doctor’s office is and the name of my physician, how to book and cancel appointments and laboratory tests.
-What are typical signs of your disease getting worse, when and who to contact when it happens.
What knowledge are good to have when transferring from pediatric to adult care? [2]
-I know what my diagnosis is and how my illness affects my body.
-I can tell when I am having a flare up or when I need to go see the doctor.
-I can list the foods and/or activities that make me feel bad or uncomfortable.
Doctor Visit
-I can answer and ask questions during my medical appointments, or ask to rephrase if I don’t understand.
-I feel comfortable telling my doctor or nurses if I do not like my treatment or I am having trouble following it.
Medications
-I can name my medications and/or treatments.
-I know when to take my medication and I’m able to get them in time.
-I can discuss changes in my medications with my gastroenterologist.
-I understand what will happen to me if I do not take my medications correctly.
-I can tell what medications I have to avoid because they may interact with the medications I already take.
Disease Management
-I can prepare my medication in advance to accommodate long trips, overnights, etc
-I know what other health services (eg, associations, social worker, dietician, psychologist) are available to me.
-I’m aware of the impact of smoking and having an unbalanced diet on my disease.
Click here to view EFCCA Youth Group Transition Survey 2017 Report
[1] Taina Arvola, Docent, University of Tampere, Finland
[2] Emily P. Whitfield, Emily M. Fredericks, Sally J. Eder, Benjamin H. Shpeen, and Jeremy Adler: Transition Readiness in Pediatric Patients With Inflammatory Bowel Disease: Patient Survey of Self-Management Skills. 2014