Transitioning Care for 18-25 Years Olds with Cystic Fibrosis
Reviewed by: HU Medical Review Board | Last reviewed: September 2019 | Last updated: August 2023
Whether a young adult with CF is going to college or joining the working world, now is the time to manage their own care. The official transition from pediatric to adult care coincides with other major life events, such as going to college, joining the workforce, and becoming financially responsible. The transition from pediatric to adult CF care should be planned and deliberate, never sudden.
Critical skills for young adults with cystic fibrosis
Young adults with CF must learn to balance their social life with the lifestyle choices critical to their health by getting regular exercise, eating well, getting enough sleep, maintaining their treatment plan, and avoiding smoking, drinking, and illegal drug use.
The nuts and bolts of self-care should be perfected during the years of 18 to 25:
- Manages all their own medications and refills
- Adheres to infection prevention and control measures
- Cleans and maintains all of their own equipment
- Calls the CF center independently when symptoms change, or when questions arise
- Writes down questions to ask their care team
- Schedules their own appointments
- Arranges transportation to all doctor’s appointments
- Manages most of their insurance and financial aspects of CF care
- Practices safe sex and uses birth control as needed
- Asks for help when appropriate, for instance when preparing for a hospital visit or when experiencing anxiety or depression1-3
Young adults with CF should also be able to educate their school, friends and coworkers about CF and the accommodations they may need (if any) to participate in the life they want to lead. Parents may still provide support if their young person asks.
Going to school and working
Many programs exist across the U.S. to help young adults with CF handle the stress of college or get job training. A CF social worker is a good place to start to learn about these programs.
When it comes to first jobs, it’s important to choose an employer that offers a health insurance plan and other benefits, such as sick leave, that fit the needs of a young adult with CF. Once again, a social worker who specializes in cystic fibrosis can help.1-3
Doctor’s appointments and privacy
At age 18, a person with CF legally becomes an adult. This results in many changes in the parent-child participation of medical visits. For instance, federal law prevents a parent from seeing test results and other legally protected health information without the young adult’s permission.
Some young adults want their parents to remain involved while others want more privacy. Regardless, the CF Foundation recommends that all young adults transfer to adult care by age 21.
The years of 18 to 25 can be a scary, challenging and stressful time. Handled poorly and the person with cystic fibrosis can get worse quickly if their adherence lags. Handled well and the young adult with CF becomes a fully functioning member of adult society.1-3