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UNMC cystic fibrosis program ranks among best in the country

A national review of cystic fibrosis centers by the Cystic Fibrosis Foundation shows that the University of Nebraska Medical Center’s adult CF program ranks among the eight top benchmark programs in the country.
 
The rankings for adult CF programs are based on several factors, such as lung function and nutritional status measured through Body Mass Index. They were based on patient data obtained from 2000-2005. Data from 2005 are available online at http://www.cff.org.
 
In separate rankings done earlier this year, UNMC’s pediatric program ranked among the top 10 percent of pediatric programs in the country.
 
The Cystic Fibrosis Foundation funds and accredits 115 cystic fibrosis care centers nationwide, including 94 adult programs. In addition, 54 affiliate programs provide multi-disciplinary care for CF with foundation support. Each center undergoes thorough evaluation by the foundation’s Care Center Committee before it receives accreditation and funding. Review of a CF care center for accreditation occurs every year.
 
UNMC currently receives a total of about $130,000 per year from the Cystic Fibrosis Foundation, with about 60 percent of the money directed toward UNMC’s pediatric program and 40 percent going toward UNMC’s adult program.
 
Joe Sisson, M.D., professor and chief of the pulmonary, critical care & sleep medicine section, saluted UNMC’s adult CF team at a celebration earlier this month. “It takes a team to do this well (become a benchmark program),” he said. “This is a shining example of how if you get the right people, it really makes a difference.”
 
John Colombo, M.D., professor, heads UNMC’s CF program for pediatrics, while Peter James (Jim) Murphy, M.D., assistant professor, heads the adult program. The pediatric program now sees 190 patients annually, and the adult program follows 105 patients.
 
Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
 
In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. The predicted median age of survival is now 37 years with many CF patients living into their 40s and beyond.
 
Dr. Colombo has been seeing CF patients at UNMC since 1981 when he took over the program established by Gordon Gibbs, M.D., in the 1950s.  Dr. Murphy started the adult CF program in 2000 after completing a three-year fellowship at UNMC in pulmonary and critical care medicine.
 
“It was important that we start the adult CF program,” Dr. Murphy said. “At the time, we had 50-year-old CF patients still seeing our pediatric CF doctors. Children and adults are very different, so it was critical that we get the adult program up and running.”
 
He cited the chemistry on his team for UNMC’s outstanding showing in the rankings. “We provide very personalized care,” he said. “We know these patients very well, as we see them often. We often consider them friends. If they need anything, they know they can always call our nurse coordinator (Jill Fliege) or Jen Rounds, our nurse specialist.”
 
Dr. Sisson said UNMC’s adult CF program has thrived. One indicator of how the program has flourished is that a physician from another center who first reviewed the UNMC program when it was getting started now “wants to come back to Omaha to find out what he can do to improve his program to our level.” 
 
Thanks to mandatory newborn screening for CF starting in 2006 in Nebraska, Dr. Colombo said children are being identified much earlier and being treated more effectively. “Instead of first seeing kids when they are malnourished or have recurring pneumonia, we are now able to see kids before they get sick,” he said. “This makes a huge difference in allowing us to produce better outcomes for our patients.”
 
He said Nebraska was the 17th state to implement mandatory newborn screening for CF. A total of 39 states now have the mandatory newborn test, which involves analyzing a spot of blood to determine if a pancreatic enzyme linked to CF is elevated.
 
Dr. Colombo attributes the success of the pediatric CF program to the outstanding, highly experienced team members who have been truly dedicated to CF care for many years. Some team members have been at the CF center for center for more than 30 years, he said.
 
UNMC is the only public health science center in the state. Its educational programs are responsible for training more health professionals practicing in Nebraska than any other institution. Through their commitment to education, research, patient care and outreach, UNMC and its hospital partner, The Nebraska Medical Center, have established themselves as one of the country’s leading centers in cancer, transplantation biology, bioterrorism preparedness, neurodegenerative diseases, cardiovascular diseases, genetics, biomedical technology and ophthalmology. UNMC’s research funding from external sources is now nearly $80 million annually and has resulted in the creation of more than 2,400 highly skilled jobs in the state. UNMC’s physician practice group, UNMC Physicians, includes more than 460 physicians in 50 specialties and subspecialties who practice primarily in The Nebraska Medical Center. For more information, go to UNMC’s Web site at www.unmc.edu.