Cystic Fibrosis Center | Transition

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When we describe transition, we define it as a process, a series of steps involved in ending care with your pediatric healthcare providers and beginning treatment with a team of providers who specialize in the care of adults with CF.

The key aspect of our Center's philosophy of transition is that we do NOT view it as simply a "transfer" of your medical records to an adult physician. No one expects you to see your Pediatric CF Team one day and then the Adult CF Team the next without preparation. We believe we have a responsibility to help you get ready to take charge of your health as one part of your overall transition to adulthood. The most important thing about transition, then, is that it is gradual, not something that happens overnight.

You will be taking charge of many areas of your life such as deciding where you want to live, go to college or what kind of work you want to do. This is the exciting part of transition: making more of your own decisions as you take on more responsibility. But as a person with an illness that requires daily attention, there are some additional tasks involved in planning for your future.

Therefore, it's important to know that you, your family and your healthcare team all share the responsibility for making your transition as smooth as possible, that we will work together to get you ready one step at a time. This way, completing your move to the Adult CF Program will be a goal you look forward to reaching just like any of the important goals in your life.

Download the Transition brochure.

Steps of Transition

The timeline below was developed with the help of our patients and families. It is what we offer during the transition years, but our goal is to make a plan with you and your family tailored to your needs! You are not required to go through all of these steps at these exact ages, but we want you to know what to expect and what we will offer.

Age 12

  • The Pediatric Team begins transition education with you and your family during your visits. This will include information about insurance, college and employment.
  • You and your parents may be asked to complete a “Transition Checklist” to figure out what you already know and what you need more information about. Education will continue over the next several years.

Age 15

  • The Adult CF Program social worker may visit you during a Pediatric Clinic visit.
  • The Team will talk about meeting without your parents in the exam room
  • If you and your family agree, you may begin to meet with the Pediatric Team without your parents in the exam room.

Age 16

  • Between the ages of 16-17, you may have a “Transition Planning Meeting” at the Adult CF Center.
  • At the end of the “Transition Planning Meeting” you will have a plan for the next year or two that might include several Adult CF Clinic appointments or a tour of the Adult Clinic/ Hospital.
  • We will begin to coordinate transfer of your sub-specialty care such as endocrinology, gastroenterology, etc.

Age 17 –18

  • You may have both Pediatric and Adult clinic visits during this year
  • Tour of CF Adult Clinic and Hartford Hospital if desired

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Transition Checklists

The purpose of the Transition Checklist is to encourage you and your family to think about what specific steps are involved in you taking more charge of your health care and in your overall "transition" to adulthood. First, by completing the Checklist, we will see what you and your parents think you already know and do by yourself. Next, we will figure out what you need to practice and which topics you need more information about. Then we can list specific things you, your family and your health care team can all do to help you feel confident in your ability to take on more responsibility. We will regularly review how well you are learning and practicing what you need to know. The "Tips for Transition" sheets include some helpful hints on the kinds of things both you and your parents can practice or think about along the way.

During a Clinic visit, the Social Worker will provide you and your parents each with Transition Checklists. Both you and your parents should complete the Checklists separately during the visit if time allows. (If not, you may complete them at home and mail/ bring them to Clinic.) That way we can see if you and your parents have similar or different ideas about what areas we need to focus on.

Follow the instructions at the top of the Checklist.

On the last page, the more detailed you can be in your answers the better. Review them with the Social Worker.

Together, we can decide what needs work and what you already do well enough on your own.

Then, we will all have some "homework" to do. For example, you may want to practice making your own Clinic appointments, so the Social Worker can provide you with instructions as to who to call and the phone number, then your parents can follow up by asking you if you made the call.

The Checklist can be completed yearly or more often if it would be useful to do so.

Finally, keep completed Checklists in your Education Notebook or create a separate one just for transition if that's easier. Keeping them will allow you to see just how far you've come in your knowledge and skills!

It is important to remember that we can be as creative as we want to be in how the Checklists are used, how to go about "practicing" new skills or how to test your knowledge about CF. We can involve other members of the team, include other family members, just focus on what you will be doing or any other ways you can think of that you will learn best. The point is that as you get better at doing things on your own, you will be better prepared to move on in all aspects of your life and plan for a great future!

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Self-Care Checklist

Although "self-care checklist" is somewhat self-explanatory, it's worth a brief description and consideration of why it might be helpful to complete and review this tool with the CF social worker, your spouse or a friend. As you are already well aware, adults with CF have additional / different medical and practical needs to think about. So this Checklist is a tool to use to review various areas of your life and figure out if you want more information on a particular topic and / or for planning ahead. It may be way too soon, for instance, to consider the possibility of lung transplantation, but at least knowing where to find out more about it might be helpful.

Although this checklist is far from exhaustive, it does cover most aspects of adult CF care that need attention going forward. The instructions at the top of the form explain how to complete it using a simple self-rating scale. It may be best to complete it when you have a chance to really give it some thought, especially the last page where more detailed responses are involved. Once completed, you may want to review it yourself, with someone close to you or with the CF social worker to identify areas you may want to research or plan for. You may also want it just for reference, even if you do not fill it out. At the very least, looking it over will get you thinking about various topics and/ or prompt conversations with your CF team, spouse, family or friends.

Download the Self-Care Checklist.

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Cystic Fibrosis Center