Transition to Adulthood for Young Adults with Chronic Conditions
Transitioning to adult healthcare usually happens around the ages of 18 to 22. However, transition does not have to happen at a certain age. Transition is decided between you, your parents and your physician, and depends on many factors including:
- Your and your family's readiness
- Your maturity level
- Your ability to transition to adult care
- Your current life situation, including whether or not you are going to college and prefer to stay with your pediatric provider until you graduate
The sooner you are involved in managing your care, the less stressful the transition process will be for everyone involved. Preparing early for transition helps alleviate — if not eliminate — the anxiety associated with a change in your physician, your nurses and your environment.
One of the most important items you will receive as you prepare to transition is the Care Binder. The Care Binder can help you organize the most important information in a central place and share key information with members of your healthcare team. The binder includes a very organized set of guidelines of what you need to do in order to be well prepared for transition.
No one likes to think about health insurance. But if you are a teenager with a chronic condition, you must think about health insurance and make sure you don’t lose it.
Your healthcare team at CHOP will help you and your family to understand why health insurance is incredibly important and will assist with finding the right health coverage for you.
Medications and hospitalization are very expensive, but more and more of the chronic illnesses are now being covered by Social Security, medical assistance or Medicaid. During the transition process, our team will give you all the information you need to help you advocate for yourself.
The pressures of growing up are difficult for everyone. When you are a young adult with a chronic health condition, you have many extra responsibilities to manage. Decisions about drinking, dating and other aspects of adulthood are even more difficult.
It’s important to know your healthcare providers don't ask personal questions for the sake of just finding out about your lifestyle choices. Their ultimate goal is to provide the best care for you. It's not just about drinking, but it’s about how it will affect your disease process itself. Your care team needs to know if you are drinking or using drugs so they can make the best decisions about your care.
If you're sexually active, it’s important to understand the impact that pregnancy could have on your transition. Pregnancy will speed up the transition to adult healthcare because pediatric specialists aren’t equipped to provide the best care for pregnant patients.
You should feel comfortable talking to your doctor about anything. We are here to provide support, to educate you about the impact of your lifestyle choices on your disease. We are not here to judge you.
What you need to know
- Drugs and alcohol can affect your disease and might make you sicker.
- You can find friends who support good choices. When you are ready you can be open with them about your disease.
- If you become pregnant, you will have to transition to adult care for your health and the health of your unborn baby.
- Your care team needs to know about your drinking, drugs and lifestyle choices. They can’t share this information with anyone without your permission.
College and employment
As a teenager or young adult with a chronic condition, you have many things to consider when choosing a college or a job:
- Do you choose a college that is close to home or far away?
- Is there a good hospital near the school you are looking to attend?
If you are going right into the work force, here are a few things to consider:
- When should you tell your employer about your condition?
- What types of benefits are important to look for?
What you need to know
The 504 plan is a document outlining reasonable accommodations and services you may need because of your health condition. It helps students with disabilities pursue the same educational opportunities as everyone else.
- Check out nearby health facilities at potential schools.
- Have your medical records on file at your college’s health services.
- Have a letter from your doctor on file at the dean’s or disabilities office so your college will be flexible if you get sick.
- Have a plan for how you will order medications.
- Consider a 504 plan if you don’t already have one.
- Your doctor can write a letter to your employer explaining your illness.
- Tell your employer about your illness when you feel it is appropriate.
- Communicate with your employer so you can each find ways to keep your condition from affecting your job.
Advice from young adults
There is so much to learn when becoming a young adult and dealing with a chronic condition. It may seem overwhelming. You may wonder who is going to help you, and what are the most important things you need to know as you begin this journey.
Medical camps: great practice for adulthood
Summer medical camp can be a great way for kids and teens with chronic conditions to learn independence. Camp also helps parents realize it’s safe for children to practice more independence with the support of people outside the family. This broadens your child’s support base; it doesn’t replace family support.
Campers of all ages ask questions and share information about their medications with those who have a common experience. They learn and support one another and take these new skills back to their lives outside of camp.
Teens start to consider their options after high school. Many counselors have been previous campers and bring a whole new perspective from having made the step of increased independence and self-care.
Taking medicines is a big part of staying as healthy as possible for people, of all ages, with chronic conditions. If you’re feeling well, it does not mean your disease is cured. You are in remission because of the medications, and when you stop taking your medicines, your symptoms can return or possibly become worse. How you feel is not the only indicator of good disease control and management.
As you transition to adult healthcare, college and employment, your care team at CHOP and Penn Medicine is here to help, and to answer any questions. Don’t be afraid to ask!
Believing in yourself is important as you transition. With your help, the help of your family and your care team, you will get through the rough times. Our goal is to make you feel better and to investigate better treatments and even cures for your disease.
Penn Medicine healthcare team
The nationally renowned gastroenterology team at Penn Medicine applies the same principles as CHOP in caring for pediatric and adolescent patients and their families:
- What's good for the patients?
- What's good for the families of patients?
- How can we make their experience better?
They are here to help you.