Two key outcomes for patients with cystic fibrosis (CF) are lung function (also known as FEV1) and body mass index (BMI). The charts below help illustrate our focus on quality improvement and its impact on outcomes. The graphs show our rates, national averages and the 10 best performing US centers using statistics from the Cystic Fibrosis Foundation National Patient Registry. 

  • The capacity to breathe and access oxygen normally, as measured by FEV1, ranges in healthy people from 85 percent to 115 percent. Children with cystic fibrosis on average lose about 2 percent to 4 percent of their lung function each year, making it important to continuously monitor lung function and seek ways to improve this outcome. 
  • Children with cystic fibrosis have difficulty digesting food and maintaining normal growth.  In CF, a high-calorie, high-fat diet is vital for normal growth in children. Nutrition and lung health are closely linked, making body mass index an important indicator for overall CF care.

Cystic Fibrosis patients 6-12 years old.

  • The Cincinnati Children’s Cystic Fibrosis Center has seen consistent improvement in lung function performance since beginning our major focus on quality improvement in 2001. Understanding national benchmarks along the way has helped to identify areas for continued improvement work.

Cystic Fibrosis patients 13-17 years old.

Cystic Fibrosis patients 6-17 years old.

Cystic Fibrosis patients 2-19 years old.

  • Cincinnati Children’s uses the median for cystic fibrosis quality measures which may differ slightly from nationally reported averages. Posted data is courtesy of the Cystic Fibrosis Foundation and is the most recent available. Visit the CF Foundation’s Care Center Data page to view cystic fibrosis outcomes from centers around the United States.

 BMI < 50th Percentile - Cystic Fibrosis Patients 2 to 19 years old.

Continuous Improvement

At the Cincinnati Children’s Cystic Fibrosis Center, we work closely with our patients and families and view them as integral members of the care team. This partnership helps to inform patients’ individual treatment plans as well as our improvement priorities. 

Highlighted below are recent quality improvement initiatives and areas of outcomes research: 

  •  Incorporating subspecialties such as endocrinology and behavioral medicine into our outpatient clinics to provide “one-stop shopping” for patients and families with CF. This helps with early identification of children at risk for CF-related diabetes or psychosocial and adherence challenges.
  • Developing a comprehensive multidisciplinary treatment algorithm. This allows us to identify and to intervene sooner with patients who have a decline in lung function or nutritional status.
  • Diagnosing respiratory infections earlier and ensuring that therapies are chosen in collaboration with infectious disease specialists.
  • Working closely with our patients and families to learn how to best support patient and family engagement during clinic visits. From this, we aim to increase disease self-management skills and confidence, which may in turn lead to better outcomes.

National Quality Awards and Recognition

Cincinnati Children’s CF Center is a recipient of the 2011 Cystic Fibrosis Foundation’s Quality Care Award: Recognizing Outstanding QI Processes and Accomplishments.  Cincinnati Children’s was among 11 centers, out of 32, selected to receive the award.

The criteria set forth for the award is sustained quality improvement work that improved outcomes and includes the following performance standards:

  • The center actively uses clinical outcomes data to identify opportunities for improvement and documents results of improvement efforts.
  • The center aligns improvement efforts to result in measurable improvement in important clinical outcomes (process improvement tied to clinical outcomes with key drivers).
  • The center consistently and actively involves patients and families in identifying, designing, and / or implementing improvement efforts.
  • The center employs innovative strategies to improve care processes and outcomes and implements system changes that result in high reliability of care processes.