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Managing Cystic Fibrosis in a Community Practice

December 14, 2007 Lutherville, Md., pediatrician James Fragetta says he was fortunate to be exposed to a cystic fibrosis clinic while in training at Johns Hopkins. Not only did he learn about the disease from faculty doing some fairly sophisticated research, but he also experienced firsthand how children and their parents were handling CF. So, when he moved into private practice, helping those same patients and families manage the disease seemed a natural fit.

"When I did face a couple of patients in primary care, I didn't go screaming and running away from them," says Fragetta. "I felt like they were more my responsibility because of my training."

Consequently, over the past decade Fragetta has built a practice that attracts CF families. He has gained even more experience managing patients' primary-care needs in consultation with pulmonologists, while parents have gained reassurance that their child with a complex disease is being well cared for by their pediatrician. Oftentimes, he explains, parents feel abandoned by their child's primary care physician when faced with a serious illness requiring specialized care. As they find themselves increasingly consulting with specialists, the pediatrician's role falls by the wayside. It doesn't have to.

"I don't pretend to be a specialist in cystic fibrosis," Fragetta says. "But I feel it's my responsibility to continue delivering primary care for kids who have specialty problems. That's very comforting for a parent."

Because of his knowledge base and experience, Fragetta fashions himself a liaison between the specialist and family, while taking charge of the patient's primary-care needs. He sees CF patients every three months as they need to be monitored more closely than most patients, stays current with the latest CF treatments, and consults whenever he feels he needs to: "From the specialists' standpoint, they would rather have a phone call every two months from a pediatrician than 15 calls from the patient's family."

Helping parents get a realistic handle on a complicated, somewhat mysterious disease is at the heart of his job. When parents hear "cystic fibrosis," he explains, they immediately think the worst—this disease will kill my child or prevent my child from doing normal things. Fragetta counters that fear with a solid base of information about the disease process. While that may be threatening to some parents, it gives them something to hang onto. He also hooks them up with support groups and community resources, and helps them overcome bureaucratic barriers to access to specialist care and needed prescriptions. Perhaps more importantly, he stresses that he will not abandon them.

"I'm here and I'm going to help you walk through this process today, the next day and over the months and years," Fragetta says. He adds, "I'm blessed by having families who are wonderful advocates for their children. They would walk the ends of the earth to get what they need for their kids."