Transitioning from Pediatric to Adult Cystic Fibrosis Care

Life expectancy for people with cystic fibrosis (CF) has increased significantly, creating a greater need for both child and adult CF centers to work together to help young adults make this transition successfully.

What does transitioning to adult care entail?

Moving from the family-centered care of a children’s hospital to the more self-directed care of an adult facility can be jarring. For the transition from pediatric to adult care to be successful, it should not happen abruptly. Transition is actually a multi-year, multi-step process that requires the participation of the medical team, the patient, and their family.

This transition can be stressful for the patient and caregivers alike; however, forging a strong relationship with the adult care team directly impacts the person’s long-term health.

Overview of the transition timeline

The steps toward transition actually begin as early as age 8. Even young children with CF should be coached by their parents and medical team to learn about their condition, what their medicines are for, and when to use them. Somewhere between 12 and 13, the child should begin answering questions about their symptoms during routine check-ups with the parent present. Around age 14, at least part of their appointment should be conducted one-on-one with the medical team with the parent coming in later.¹

Self-care responsibilities should increase slowly over time so that by age 18, the teen with CF is ready to manage their care with support as needed by caregivers. Transitioning teens to self-care is especially important for those adolescents who are going away to college. The CF Foundation recommends that all patients be transferred to an adult medical team by age 21.¹

For those reluctant to begin the process, it may help for families to remember that with today’s treatments, a person with CF is likely to be treated by their adult medical team for far longer than their pediatric team.

Challenges to a successful transition

Transitioning a child with CF gradually, in stages appropriate for their age and maturity, greatly increases the chances of success and reduces interruptions in care. It’s common for parents to have a hard time letting go and for teens to want to continue being treated like a child.^1,2

Transitioning teenagers

Like all children growing up, teens with CF want to sleep late, rebel against rules, and hate being reminded about their duties (nagged). They’re doing all the normal young adult things such as learning to drive, graduating high school, navigating college, exploring their sexuality, launching a career, and becoming legally responsible for themselves.

Teens with CF must navigate these rites of passage while adhering to their treatment plan and learning to care for and advocate for themselves. It’s a complex time, but with dedication, the young person with CF can forge strong bonds with their new care team and preserve their quality of life.^1-3

Additional CF resources

No two health systems are alike, so exactly how the hospital and medical team transition someone with CF from the pediatric to an adult clinic will vary. However, any clinic accredited by the CF Foundation will follow basic guidelines set by the foundation.

For more tips on transitioning from pediatric to adult care, visit:

• CF RISE
• Got Transition
• University of Wisconsin Children’s Hospital Handbook (PDF)