In 2009, Children's cystic fibrosis program was designated a Therapeutic Development Network Center. Since this designation, more than 60 percent of Children’s patients with cystic fibrosis annually participate in one or more research studies.

  • Safe 
  • Timing 
  • Efficient 
  • Effective 
  • Patient-Family Centered 
  • Equitable

These six areas for measuring quality of care were developed by the Institute of Medicine and are widely used by health care organizations. If you have a question about Children's data, we encourage you to speak to your physician. We are happy to talk to you about program outcomes and the prognosis for your child. 

Safe 

Interpretation: None of our patients reported second hand smoke exposure in 2009.

What are we doing to improve: We continue our smoking cessation efforts and have a certified smoking cessation specialist on staff.

Data source: National Cystic Fibrosis Registry

Benchmark data: 25,638 cystic fibrosis patients in National Cystic Fibrosis Registry

Interpretation: Children's influenza immunization rate is well above the national average, with over 80 percent of patients being immunized.

What are we doing to improve: All patients are encouraged to receive yearly flu vaccines and are educated about it's importance of preventing disease.

Data source: National Cystic Fibrosis Registry

Benchmark data: 25,638 cystic fibrosis patients in National Cystic Fibrosis Registry

Timely

Interpretation: Cystic fibrosis is a chronic, lifelong disease that requires regular treatment to maintain health. It is recommended that children with cystic fibrosis see their provider at least four times, have at least one respiratory culture, and two pulmonary function tests per year. Children's is slightly above the national average in meeting this recommendation.

What are we doing to improve: We are working on new strategies through our EMR to improve communication and follow-up.

Data source: National Cystic Fibrosis Registry

Benchmark data: 25,638 cystic fibrosis patients in National Cystic Fibrosis Registry

Efficient 

Interpretation: Oral glucose tolerance test (OGTT) is used to screen patients for cystic fibrosis-related diabetes. Glucose screening in nondiabetic cystic fibrosis patients is recommended yearly for patients 14 years and older. Children's has the second highest screening rates for diabetes, with two-thirds of our patients receiving the recommended screening.

What are we doing to improve: We are participating in a leadership and learning collaborative sponsored by the CF Foundation to improve outcomes of patients with CF-related diabetes.

Data source: National Cystic Fibrosis Registry

Benchmark data: 25,638 CF patients in National Cystic Fibrosis Registry

Interpretation: Children's length of stay for patients with pulmonary exacerbations is the same as the national average.

What are we doing to improve: We are examining several strategies to reduce hospital length of stay including home IV therapy.

Data source: National Cystic Fibrosis Registry

Benchmark data: 25,638 CF patients in National Cystic Fibrosis Registry

Effective

Interpretation: Lung function is measured by FEV1, or Forced Expiratory Volume over one second. A higher FEV1 rate is related to better lung function. Children's performs better than the national average.

What are we doing to improve: We are currently involved in a quality improvement project to ensure our patients are on CF Foundation approved therapies.

Data source: National Cystic Fibrosis Registry

Benchmark data: 25,638 cystic fibrosis patients in National Cystic Fibrosis Registry

 

Interpretation: Body Mass Index (BMI) is an indicator of nutritional status that is calculated using a child's height, weight, age and gender. In patients with cystic fibrosis (CF), a higher BMI is related to better lung function. Patients with a BMI above the 50th percentile range have the best pulmonary outcomes. Most of Children's patients have BMI's above the 50th percentile.

What are we doing to improve: We encourage families to be seen in the clinic every three months to identify nutritional problems. We also have a psychologist as part of the cystic fibrosis team to help families with feeding and nutrition issues.

Data source: National Cystic Fibrosis Registry

Benchmark data: 25,638 cystic fibrosis patients in National Cystic Fibrosis Registry

Patient-family centered 

Interpretation: Most families said they had complete trust and confidence in their provider. Eighty-seven percent said they were involved in decisions about their child's care as much as they wanted.

What are we doing to improve: Children's CF team is dedicated to involving patients and their families in their care by surveying families annually. We are also in the process of developing a parent advisory council for patients with CF.

Data source: Family Survey

Benchmark data: Not available

Equitable 

This measure is still in process.