Transitioning to Adult Care

Cystic fibrosis has long been considered a disease that affects mainly children. Many CF patients are seen by a pediatrician from infancy well into their early twenties. Thanks to earlier diagnosis and more effective therapies that can be done early in a child’s life, these children are well on their way to a healthy adulthood.

But what about those years in between? How can parents prepare their children for the transition to adult care? When should the child begin taking responsibility for their own medical needs? What are the things that children need to learn before they’re ready for the transition?

Cystic fibrosis patients and their physicians, especially the pediatricians and the rest of the CF Team, often form strong bonds. Together the patients, their parents and the doctors have learned how to deal specifically with the individual. This tremendously supportive network takes years to build, and the thought of walking away from it all to begin with a new doctor and an unknown CF team can be frightening. The fear of the unknown and the worry about having to start all over with someone new can fill a CF patient with anxiety.

Patients who have a great deal of self-confidence and a solid understanding of their particular needs as a CF patient handle the transition much better than those who have never involved themselves in their own health care. Preparing to transition to adult care is just that—a transition. As the parents gradually take a lesser (but no less supportive) role in their child’s health care, the patient gradually learns to take control. Ultimately this promotes self-esteem, a sense of empowerment, and even better health for those who are compliant with doctor’s orders.

Studies have proven that people with chronic diseases who frequently set challenging but reasonable goals for themselves are better able to cope with the world around them. They are able to manage their disease with an optimistic yet realistic attitude. This contributes to a greater overall quality of life.

The files below are something of a game plan. The goal: being well prepared to leave the pediatrician as a confident, competent adult who knows how to cope with CF on its many levels and to have the best quality of life possible. Please note that these files are for disabilities in general and aren't specifically targeted to cystic fibrosis.

Health Care Transition Workbook (English, age 12-14)
Health Care Transition Workbook (Spanish, age 12-14)

Health Care Transition Workbook (English, age 15-17)
Health Care Transition Workbook (Spanish, age 15-17)

Health Care Transition Workbook (English, age 18+)
Health Care Transition Workbook (Spanish, age 18+)