Cystic Fibrosis Center Outcomes Data

Cystic Fibrosis Center

Cystic Fibrosis Center Outcomes Data

CF Information from Kids Health

For Parents

For Teens

For Kids

The University of Wisconsin Cystic Fibrosis Center in Madison, Wisconsin, is one of more than 115 care centers across the country accredited by the Cystic Fibrosis Foundation. We work closely with the Foundation to continue to improve the care and quality-of-life of our patients and publicly report our center-specific data to give patients, families and ourselves an opportunity to look for areas of improvement.

Pulmonary Function and Nutritional Outcomes

Pulmonary function and nutrition are important indicators of the health of cystic fibrosis patients. The Forced Expiratory Volume in 1 second (FEV1, the volume of air a person is able to forcefully blow out in a second) is considered a good indicator of lung function. 

The following is data from 2017 and displays lung function for patients treated at the UW Cystic Fibrosis Center compared to the average score for all centers in the United States.

  UW Health U.S. Average
6-12 years old 96.1% 96.5%
13-17 years old 96.4% 89.4%
18-29 years old 83.9% 75.2%
30 years and older  60.7% 60.6%

Of note is that in 2013, the CF Foundation started using the Global Lung Initiative reference equations. (The previous reference equations were by Wang and Hankinson.) This change results in lower FEV1 percent predicted values for preteens and teens.

The Body Mass Index (BMI, a ratio of body weight to stature) is considered a good indicator of nutritional status. The following is data from 2013 and displays BMI for patients treated at the UW Cystic Fibrosis Center compared to the average score for all centers in the United States.

  UW Health U.S. Average
Median BMI percentile for patients 2-19 years old 63.9% 57.2%
Median BMI for patients 20 years and older  23.8 kg/m2 22.7 kg/m2

Care Provision Performance

Current guidelines of care recommend that patients with cystic fibrosis be evaluated at an accredited CF Center at least quarterly. In addition, patients should undergo pulmonary function testing at least two times a year and have a culture of their respiratory secretions performed at least once a year. The recommendation is also to increase the frequency of follow up for those patients that have more severe disease.

We believe that more frequent clinic visits and more frequent monitoring of pulmonary function and sputum cultures can lead to better outcomes. Thus, we strive to exceed the Cystic Fibrosis Foundation's recommended testing and obtain pulmonary function test and a sputum culture (or throat swab culture for patients who cannot cough out sputum) at every clinic visit.

The table represents two groups of patients who had four or more visits, four or more cultures and two or more PFTs.

  UW Health Top 10 Centers U.S. Average
Children 7-17 years with ≥4 visits, ≥1 culture, ≥2 PFTs 56.7% 95.3% 70.6%
Adults ≥18 years with ≥4 visits, ≥1 culture, ≥2 PFTs 50.9% 80.7% 53.5%

Our data is shown compared to the average outcomes reported by the Cystic Fibrosis Foundation for all accredited CF Centers in the US and also against the values reported by those Centers regarded as top-10 performers. (2017 data)