Transitioning a young patient, pediatric social worker Allison Pina, left, and adult social worker Megan Langergren.

Celeste Dixon of Glen Burnie, Md., couldn’t have been more excited about graduating from high school and attending college. But as a 17-year-old with cystic fibrosis, she wanted to know if she could attend an out-of-state college. Could she have a roommate? Or would she, because of her vulnerability to lung infections, be limited to a single private room? Or was living on campus entirely out of the question?

Such concerns are not uncommon—and not without some anxiety—among patients with CF as they begin to leave adolescence for young adulthood, notes pediatric senior clinical nurse Donna Peeler of the Johns Hopkins Cystic Fibrosis Center.

“Concerns about moving from high school to college, leaving home, it’s a very normal thing,” says Peeler. “If we can ease that process and identify their fears and what they’re anxious about, we can help them build their confidence in living more independent lives.”

To help patients manage the myriad concerns that come with greater independence—from refilling prescriptions and dealing with insurance companies to making lifestyle choices—Peeler and her colleagues in the CF Center are utilizing a transition program for patients called “CF Rise.” The program provides a transition timetable, skills checklist and resources, among other aids, to facilitate the shift.

When this process begins depends on the patient, transition team members say, although they may begin transitioning as early as age 16. Considerations include their knowledge base, level of maturity and trust in adult providers.

“A lot of patients would be happy to hang on to pediatric care as long as they can,” says pediatric social worker Allison Pina. “They’re not eager to leave since they’ve been coming to us since they were born.”

Switching to adult care can be an emotional issue, too, says Pina, citing at least one 17-year-old girl who became tearful after being asked to make a transition appointment. “The patient might say of adult providers, ‘They may not like me, they may not get me—you guys get how I am,’” says Pina.

Also, Pina adds that some pediatric patients feel they need to know everything about their disease and how to manage it on their own before transitioning to adult care: “We try to explain to them that that’s not what this is about.”

What it’s about, transition team members say, is education, preparation, and the thoughtful development of transition tools enabling a seamless switch. The CF Rise curriculum includes knowledge quizzes at ages 16 and 18 on topics like lung function and nutrition, and a checklist that evolves from what mom was doing to what the patient is doing today.

“The transition happens over multiple visits, it’s something we continually work on,” says adult CF nurse practitioner Mhegan Ramsay. “It has to become routine for patients, where they want to learn about the disease for themselves.”

“Look, three months ago your mom was doing all these things,” adds Pina. “Look at your checklist now. Everything is moving toward you doing it yourself.”

But doing it right—and ensuring continuity of care during the transition—is the highest priority, say team members. Having both pediatric and adult providers under one roof at one CF Center, they add, helps immensely. Adult and pediatric physicians, nurses and social workers meet monthly to discuss transitioning patients and their psychosocial issues, and then meet with the patient at his or her final visit in the pediatric CF clinic.

“Our doctors specialize in adult care, and different issues come up as patients become adults,” says adult CF social worker Megan Langergren. “We try to make it a natural experience, not a forced or negative change. It’s a milestone, you’re making it to the adult program.”
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