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As an adult with CF, you will face new challenges that will require a new CF care team. They are trained to help guide you through this next phase of your life. It can be hard saying goodbye to your pediatric team. After all, they have been with you since diagnosis and may feel more like family members than healthcare workers. Your new adult team can help you address issues such as1:

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Members of the program are eligible to receive:

  • Free Vitamins & Supplements
  • Copay Assistance
  • Loyalty Rewards
  • Going to college
  • Family planning
  • Choosing a career
  • Financial concerns
  • New health challenges (such as CFRD)

Making the transition1

Moving on to an adult CF care team typically takes place around the age of 18. Preparing for the transition may start in your early teens. To help make a smooth transition from pediatric to adult care, you can do the following:

Be prepared: You want to feel comfortable and confident making your transition. If you have any questions or concerns, talk them over with your family and pediatric and adult CF care team.

Be responsible: Know the names and doses of all medications you take and learn all you can about insurance coverage.

Be organized: Share all medical records from your pediatric team with your new adult team.

Be understanding: You are not the only one making a transition…so are your parents. Your pediatric team has helped them get you to where you are today. It can be just as difficult for them to have to say goodbye.

Transition questionnaire: Are you ready?
  1. Do you take responsibility for your own care most of the time?
  2. Do you know your health history?
  3. Do you fill your own prescriptions?
  4. Do you know the names and doses of all your medicines?
  5. Do you take your medicines and do your treatments without a reminder from your parents?
  6. Do you request accommodations ahead of time to ensure you keep up with your therapy when needed?
  7. Do you schedule your own doctor appointments?
  8. Do you make your own meals, using supplements when necessary to meet your nutritional needs?
  9. Do you ask questions of your health care team and answer their questions truthfully?
  10. Do you have a plan for your future, such as college or work?

If you answered “No” to any of these questions, talk to your CF care team for further preparation.

Parents and caregivers

If you're a parent or caregiver of a child with CF, it's a good idea to start preparing them for transition during their late childhood and teen years. Below are some things that parents and caregivers can do to help ensure a smooth transition process. When you feel the time is right, start addressing each one of these with your child.

  • Begin talking to your child about changes that will happen in the clinic as he or she gets older (taking on more responsibility, being asked questions about CF directly, etc)
  • Take an active role in your child's care. Slowly start to encourage independence. This will take time
  • Encourage teenagers to see their CF care team alone for most of the visit. Join in at the end. This will help teenagers form their own relationships with the CF care team
  • Speak with another parent or caregiver who has had a child transition from pediatric to adult care
Reference: 1. Moving on…transitioning from the pediatric to the adult care team. University of Wisconsin Children's Hospital website. http://www.uwhealth.org/files/uwhealth/docs/pdf6/CFCenter_MovingOn.pdf. Accessed May 1, 2016.

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