Care for Cystic Fibrosis

"I have the help I need"—Miklos Homoki of Easton, Pa. has cystic fibrosis. But thanks to his care he has no trouble keeping up with his friends.

Infants, children and adolescents with cystic fibrosis (CF) can get high-quality care close to home at Lehigh Valley Health Network, recently designated a Cystic Fibrosis Affiliate Center of The Children’s Hospital of Philadelphia (CHOP). It’s the only such program in the region recognized by the Cystic Fibrosis Foundation (CFF).

“Our health network has a long tradition of caring for children with CF and other lung problems,” says pediatric pulmonologist Robert Miller, M.D., “This affiliation gives young patients access to research studies that will lead to a better quality of life.”

The CFF supports and accredits 115 cystic fibrosis care centers, including 94 adult programs, and more than 50 affiliate programs nationwide. Thanks to CFF-supported research and improved treatments, the predicted average age of survival for cystic fibrosis patients is now 36.5 years, up from 32 in 2000.

To be accredited, Lehigh Valley Health Network submitted a formal application and received a comprehensive hospital site visit, including a review of the inpatient neonatal and pediatric intensive care units and pediatrics program. We also met specific criteria including having:

• a designated core team of doctors, nurses, respiratory therapists, pediatric radiologists, a nutritionist and social worker and other committed caregivers
• personnel and facilities available 24 hours a day, seven days a week to stabilize patients, assure airway access and prepare critically ill patients for transport to CHOP, if necessary
• an on-site laboratory for sweat testing and microbiology that meets stringent criteria for testing and collection

“By providing this specialized care, we can ensure young patients are getting the best care,” Miller says.

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