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Cystic Fibrosis Outcome Data

The Cystic Fibrosis Foundation (CFF) now publishes national outcome data from cystic fibrosis (CF) centers across the United States.

Below are pulmonary function and nutritional outcomes from Children’s Hospital of Pittsburgh of UPMC. Both outcomes are considered important indicators of the health of CF patients. These two aspects have significant prognostic implications and are strong determinants of longevity (length of life) and quality of life. 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 Body Mass Index (BMI, a ratio of body weight to stature) is considered a good indicator of nutritional status.

Children’s Hospital's data is shown compared to the average outcomes reported by the CFF for all accredited CF centers in the United States and also against the values reported by those centers regarded as top 10 performers. (2010 data)

Measures

Level at Children's CF Center

National Average

National Goal

Lung Function in Children *
Mean FEV1 percent of predicted in children 6 to 17 years of age.

96.6

91.4

100.0

Nutritional Status in Children *
Mean BMI percentile in children 2 to 19 years of age.

53.1

50.9

50.0

Screening for Diabetes in Teens and Adults
Percent of non-diabetic patients 14 years of age and older screened for CF-related Diabetes (CFRD).

91.9 

83.5

95.0

Guidelines for Care in Children
Percent of children less than 18 years of age who had at least four clinic visits, two lung function tests, and a sputum or throat culture in 2009.

74.8

67.4

90.0

* Adjusted for attained age of patients, gender, pancreatic sufficiency, race/ethnicity, socioeconomic status, and age of diagnosis

The above data is raw data supplied to us by the Cystic Fibrosis Foundation (CFF). There are factors that can influence the data. The CFF has made adjustments in the data (adjusted for attained age of patients, gender, pancreatic sufficiency, race/ethnicity, socioeconomic status, and age of diagnosis) and has publicly reported this on its Web site.

Last Update
September 25, 2014
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Last Update
September 25, 2014
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