Cystic Fibrosis: Upward Trend For Key Health Outcomes

In fact, the outlook for people with CF continues to improve steadily each year -- and this progress is accelerating due to quality improvement programs spearheaded by the CF Foundation.

The new data is posted on the CF Foundation's Web site under "Care Center Network." It includes four measures vital for the health of people with CF: lung function, nutritional status (body mass index), screening for CF-related diabetes, and adherence to recommended outpatient clinic visits and tests.

In December 2006, the CF Foundation was one of the first organizations of its kind to publicly release health outcomes data in an effort to accelerate the rate of improvement in care. Going forward, data will be updated annually, allowing people with CF to track progress at their individual care centers.

The 2006 data shows gains across the board.

Highlights include:

• Significant improvement in the nutritional status of children, ranked by body mass index (BMI). In fact, median BMI rose from the 38th percentile to the 46th percentile between 1999 and 2006 -- bringing these children to nearly normal growth levels.
• Enhanced improvement in lung function for adults and children between 1999 and 2006. Improved lung function leads to added years of life.
• Median predicted age of survival has doubled in the last 25 years. It rose eight years between 1999 and 2006 -- from age 29 to age 37.

The data provided online comes from the CF Foundation's Patient Registry, a database of health-related information from 24,000 people with CF who have agreed to have their data entered for research and quality improvement purposes.

The National Institutes of Health has recognized the Foundation's care center network as a model for delivering care for a chronic disease.