Cystic Fibrosis Foundation Hosts Quality Improvement Summit — Caregivers from 15 States and Canada Gather in Hartford for Intensive Learning

Central Connecticut Cystic Fibrosis Center Becomes National Model after Significant Gains in Health Outcomes for CF

June 2, 2008

(Bethesda, Md.)—Physicians, nurses, dieticians, social workers and respiratory therapists from 15 states and Canada who treat cystic fibrosis will gather in Hartford, Conn., June 2-4 to observe first-hand how the Central Connecticut CF Center delivers exemplary care. The center, which has become a national model, includes Connecticut Children’s Medical Center for pediatric care and Hartford Hospital for adult care.

The first-of-its-kind gathering is designed to showcase the processes of care that resulted in superior medical outcomes at the Connecticut care center, and inspire visiting healthcare providers to creatively implement improvements in their own care centers. The Connecticut center belongs to a nationwide network of 115 Cystic Fibrosis Foundation-accredited care centers.

“This concept is called benchmarking—and while common in other industries—it’s rare in medicine,” said Bruce Marshall, M.D., vice president of clinical affairs for the Foundation. “Benchmarking is one of the core strategies of our quality improvement program, and overall, we remain highly committed to driving improvement throughout our care center network.”

Cystic fibrosis is a life-threatening genetic disease that causes serious lung infections and digestive complications. It affects 30,000 children and adults in the United States and 70,000 people worldwide. Some 10 million Americans are symptomless carriers of a defective CF gene.

The outlook for people with CF continues to improve steadily each year. Life expectancy has more than doubled in the last 25 years. This progress is accelerating due to quality improvement programs led by the Foundation, the sponsor of the event. 

“We’ve learned that improving care doesn’t happen by accident—it takes a team with tremendous dedication, years of hard work and a close partnership with our patients and their families,” said Craig Lapin, M.D., center director of the Central Connecticut CF Center. “We are proud to offer exceptional care, and are grateful to the Foundation for promoting quality improvement and helping to extend the lives of CF patients across the country.”

The most vital health measure for people with CF is lung function—the capacity to breathe and access oxygen normally.  Lung function of healthy people ranges from 85 – 100 percent. People with CF lose about 2 percent of their lung function each year.

In 2002, the Central Connecticut CF Center participated in the Foundation’s Learning and Leadership collaborative, an intense quality improvement program. At the start of the collaborative, average lung function for CF patients at the pediatric center (measured by FEV1) was 89 percent. Using quality improvement techniques, today average lung function has jumped to 98 percent, making it among the best centers in the country. In addition, the nutritional status of children (measured by body mass index) has jumped from the 47th percentile to the 60th percentile. This measure is important because children with CF have difficulty digesting food and maintaining normal growth. 

“We selected the Central Connecticut CF Center to host this event because of its remarkable achievement in improving health outcomes for people with cystic fibrosis,” said Preston Campbell, III, M.D., executive vice president for medical affairs of the Cystic Fibrosis Foundation. “They’ve aggressively pursued the most effective quality improvement techniques available and now are among the best in the country. We congratulate the center on this success.”

Key health outcomes for each of the 115 CF care centers accredited by the Foundation are available to the public at www.cff.org/treatments/CareCenterNetwork/CareCenterData/.

About the Cystic Fibrosis Foundation
The Cystic Fibrosis Foundation is the leading organization in the United States devoted to cystic fibrosis. The CF Foundation has more than 80 chapters and fund-raising offices nationwide and supports a network of 115 Foundation-accredited CF care centers, which provide patients and families with vital treatment and other CF resources.

Based in Bethesda, Md., the Foundation is one of the most efficient organizations of its kind. Ninety percent of every dollar of revenue raised is available for investment in CF research, care and education programs. The National Institutes of Health and many prominent publications, including Forbes and USA Today, have heralded the Foundation's innovative business model, which fuels drug discovery and development programs. For more information, visit www.cff.org.

Media Contacts

• Laurie Fink, Director of Media Relations, Cystic Fibrosis Foundation: 301-841-2602; lfink@cff.org
• Christopher Boyle, Communications Manager, Connecticut Children’s Medical Center: 860-610-5701; cboyle@ccmckids.org