Outcomes

The mission of the Cystic Fibrosis Foundation is to cure cystic fibrosis and to provide all people with the disease the opportunity to lead full, productive lives by funding research and drug development, promoting individualized treatment, and ensuring access to high quality, specialized care.

The Cystic Fibrosis Foundation's Patient Registry captures a broad range of data on the health of those living with CF, providing critical information to help advance many important initiatives - from improvements in the quality of CF care and the development of care guidelines to the design of clinical trials to test new CF therapies.

The below information are excerpts from the 2018 Patient Registry Report for our center, with the information regarding lung function and nutritional status highlighted.

Pulmonary Outcomes

Pulmonary function is an important clinical health indicator for people with CF. FEV1 is a measure of lung function. It is the forced exhale volume of air in the first second of an exhaled breath after a maximal inhalation. It is shown as a percent predicted, based on the FEV1 of healthy, non-smoking people of the same age, height, gender and race. The below graphs show our center's median FEV1 percent predicted, displayed in red, ranking for 2018 in patients 6 - 12 of age and 13 - 17 years of age and also our center's trend from 2009 - 2018 according to the CFF Patient Registry.

  • Our center is ranked 5th in the nation for lung function in patients 6 - 12 years old among all centers
  • Our center is ranked 9th in the nation for lung function in patients 13 - 17 years old among all centers
  • Our center is ranked 1st in the nation for lung function in patients 6 - 17 years old in centers with >100 patients.

Nutrition Outcomes

Nutritional Outcomes are a key indicator of health in cystic fibrosis patients. Research suggests that maintaining a healthy weight is also important to lung function. Children and teens with CF need adequate nutrition to grow and stay healthy. Patients less than 24 months of age are assessed using the WHO Nutritional Outcomes. Children and adolescents age 2 to 19 years of age are assessed using BMI percentile. BMI percentile matches a child's BMI to other children in the United States of the same age and gender. The below graphs show our center's ranking for 2018, displayed in red, and also our center's trend from 2009 - 2018 according to the CFF Patient Registry.

Current QI Projects

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Bridging the Gap Between Inpatient and Outpatient Cystic Fibrosis Respiratory Care

The goal is to improve the quality and consistency of respiratory care provided to our CF patients regardless of patient setting and to improve patient satisfaction. This project was developed based on feedback from our patients and families. Through educational skills day, pre and post Education Surveys, and educational “cheat sheets” for easy access to information, we plan to provide all respiratory therapists with consistent care information and guidelines to ensure proper and consistent respiratory care is provided to all CF patients.

LLC III and CF FUN to OneCF LLC

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LLC III

We are participating in a quality improvement program which lasts from June 2017- October 2018. LLC3 provides us with fundamental improvement knowledge, skills, and practice to improve CF care processes and clinical outcomes for people with CF with a primary focus on pulmonary and nutrition. Throughout the program we have attended multiple learning sessions and a benchmarking site visit in which we learn different skills such as effective communication, co- production, patient and family experiences and team dynamics and relationships. During our benchmarking site visit we strive to gain new knowledge by observing, sharing and learning about processes at a high performing CF center.