Transitioning Care for 13-17 Years Olds with Cystic Fibrosis

Reviewed by: HU Medical Review Board | Last reviewed: September 2019

Adolescence is a trial run for adulthood for all teens. It’s a time of taking on incrementally larger doses of adult responsibilities while still under parental supervision. The same goes for teens with cystic fibrosis (CF) and their care.

Importance of transitioning care responsibilities

Teens with CF can and should be prepared gradually for the years between 18 and 21 when they will go to college, get a job, and move to an adult care center. The self-care skills acquired in these years set up a teen for a healthier adulthood that enables them to lead the life they want.1

As with ages 8 to 12, caregivers should coach the child to develop skills and accept responsibility, in much the same way that a teen learns to make meals or grocery shop for the family. By ages 18 to 25, parents should be part of the young adults CF support team, but not primary caretakers.1,2

Ages 13 to 15

The younger teen years provide a time of great physical and mental growth when glimmerings of the adult this child with CF will become. Their maturation process should include many self-care milestones, including:

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  • Independently uses enzymes and medications, and handles their own airway clearance
  • Cleans and disinfects their equipment
  • Tracks, sorts, and stores drugs, identifies the need for refills and informs care team if running low
  • Understands what their FEV1 numbers mean
  • Begins to learn about financial issues related to a chronic illness such as insurance and patient assistance programs
  • Understands respiratory and digestive changes that may occur
  • Adopts more responsibility for healthy habits such as diet, sleep, exercise, and avoiding smoking and drinking
  • Helps prepare for hospital visits by packing and alerting school or work1-3

Around age 13 to 14, the child should spend at least half of their doctor’s appointments along with their care team, with a parent joining for the last half to review information, ask questions, and air concerns. At this stage, the child should be able to independently answer questions about their symptoms and alert the care team to any changes.

Ages 16 to 18

At this stage, a teen with CF should be able to take care of their own treatments with only reminders from their parents. Parents are still involved in the most complicated aspects of CF care, such as coordinating multiple specialists and insurance, but their teen should be well on their way to full independence. Signs of this include:

  • Fully understands cystic fibrosis and how it impacts the body
  • Understands the tests done quarterly and annually and what their test results mean
  • Handles all aspects of their treatment independently from taking medicines and enzymes to performing airway clearance techniques
  • Monitors inventory of medications and supplies
  • Writes down questions to ask care team
  • Is responsible for healthy habits such as diet, sleep, exercise, and avoiding smoking and drinking
  • Tracks symptoms and reports changes to parent or health team
  • Prepares for hospital visits with little supervision
  • Learns more about the financial aspects of CF, including insurance and assistance programs1-3

By this age, a teen with CF should be able to call and talk directly to the care team if changes in their health occur. They should begin planning what they will do when they finish high school. They should also tour an adult CF facility and meet adult pulmonary and CF specialists.