What to Know About Moving on From a Pediatric CF Center
Beginning the transition
If you’ve been going to the same cystic fibrosis (CF) center for checkups and treatment since diagnosis, you may feel quite comfortable there. But eventually, the time comes to switch to an adult CF center.
Ask your current CF care team when to start transitioning to an adult CF Center. They can answer questions, give details on the process, and recommend centers, if needed.
For caregivers, this transition may be a good time to start having your loved one take a more active role in their CF care: booking appointments, having discussions with their care team, taking the lead on their treatments, and even understanding their insurance plans.
[What] I think is really important for any parent out there…is teaching your children young to give them the life skills they need as adults to manage this illness.”
–Jen, caregiver of a young adult with CF
Building relationships with your new team
Like any new relationship, it can take time to become comfortable with the team of professionals at your new adult CF center. It’s okay to take some time to feel it out, and open up as you get more comfortable. But it’s also important to be honest when it comes to things that could affect your health, like how you’re doing with your treatments, your diet and exercise routines, and any new or worsening symptoms you might be having.
Questions to ask your
new CF center
Questions to ask your new
CF center
- Will I be able to contact an on-call healthcare provider when the center is closed?
- Does this center offer telehealth services when in-person appointments aren’t possible?
- How can I access my electronic records to review appointment notes?
- Will I be able to see a healthcare provider if I’m sick, but do not require a hospital visit?
- How often will I need to visit the CF center?
- Does this center arrange for transportation?
