Cystic Fibrosis Foundation - 2006 Press Releases

CF Foundation Publicly Reports Care Center Data for National Care Center Network

December 20, 2006

(Bethesda, MD)—The Cystic Fibrosis Foundation is taking a major step to further improve care for people with cystic fibrosis (CF). Today, the CF Foundation released health outcomes data for all accredited care centers in its nationwide network of more than 115 centers. The information can be found on the CF Foundation’s Web site (www.cff.org) under “Care Center Network.” It shows how well patients as a whole are doing at each center, and how the outcomes compare both to national averages and to national goals set by medical experts.

The data includes four measures vital to the health of people with cystic fibrosis: lung function, nutritional status (body mass index), screening for CF-related diabetes, and regularity of outpatient clinic visits and tests. The information used to create these reports comes from the CF Foundation’s Patient Registry, a database of health-related information from people with cystic fibrosis who have agreed to have their data entered for research and quality improvement purposes.

The CF Foundation’s care center network has been recognized by the National Institutes of Health (NIH) as a model for delivering care for a chronic disease. The outlook for people with cystic fibrosis continues to improve steadily each year. The Foundation is releasing this data to help educate the CF community about health outcomes and to inspire interest in taking quality of care to the next level.

“We believe that sharing the data is the right thing to do—it will help us get better faster,” said Bruce C. Marshall, M.D., the Foundation’s vice president of clinical affairs, who led the initiative.

Added Robert J. Beall, Ph.D., president and chief executive officer of the CF Foundation: “The aim in sharing the data is to strengthen the partnership between the health care professionals at our care centers and the patients and families they serve. This partnership is important in achieving the best possible outcomes for cystic fibrosis.”

Cystic fibrosis is a life-threatening genetic disease that affects approximately 30,000 children and adults in the United States. It causes serious lung infections and digestive complications. About 10 million people are unknowing carriers of the CF gene. In 1955, the CF Foundation was established by a group of parents looking for way to cure and control CF. At that time, most children with CF died before reaching elementary school. Today, as a result of dramatic improvements in research and care, the median age of survival is nearly 37 years old, and 43 percent of the CF patient population is age 18 or older.

“The CF Foundation is one of the first health organizations in the country to make its health outcome data available to the public,” said Donald Berwick, M.D., president and CEO of the Institute for Healthcare Improvement, a nonprofit organization focused on improving health care worldwide. “This is a bold step and will reap rewards for patients and families and the quality of cystic fibrosis care—while fueling interest in making other health data public.”

The CF Foundation formed an expert committee in 2004 to guide the process of taking health outcomes data from its care center network and making it public. This public reporting effort is part of a comprehensive quality improvement program launched by the Foundation in 2002 to accelerate improvement in CF care throughout the care center network. The initiative includes training care center staff, providing tools to identify and implement best practices, and building stronger partnerships between patients and families and care center clinicians.

“The history of the CF Foundation is one of continual improvement,” said Gerald T. O’Connor, Ph.D., professor and associate dean at Dartmouth Medical School, who chaired the CF Foundation’s expert committee to develop the public reports. “The care centers have done remarkable work improving the quality of life for those with the disease. The reporting of this data is an important sign of the shared responsibility of clinicians and patients—all on one team—to work together for the best outcomes.”

The CF Foundation encourages people with cystic fibrosis and their families to get involved in quality improvement efforts at their care centers. In addition, it is critical for people with CF to maintain their recommended daily health regimen, which can include airway clearance, inhaled antibiotics, enzymes taken with each meal and snack, and additional treatments. Most care for CF happens in the home, and as a result, the outcomes reported are the shared responsibility of the patient, family and health care staff.

To learn more about the CF Foundation’s public reporting, watch an archived Web-cast program “Quality Care is More Than the Numbers.” In addition, people with cystic fibrosis and their families are encouraged to contact their care center if they have questions about the data.