EFFECTIVENESS: LUNG FUNCTION IN PATIENTS WITH CYSTIC FIBROSIS
Why is this measure important?
Cystic fibrosis (CF) is a genetic disease that can result in chronic lung infection, inflammation and hospitalization. At Children’s Hospital Boston, we care for more than 300 children, adolescents and young adults with CF, making us one of the largest Cystic Fibrosis Foundation-accredited care centers in the country.
Beginning around age six, children with CF begin to perform a lung function test referred to as FEV1 (for “forced expiratory volume in one second”) to measure their lung health and how well their treatment is working. The results are reported as a percentage of what would normally be expected based on the patient’s age, gender, race, and height. In this measure, a higher percentage indicates better lung health.
How do we track this measure?
We receive data from the national Cystic Fibrosis Foundation Patient Registry, which collects information each year on approximately 27,000 children and adolescents with CF cared for by the nation’s 165 accredited hospitals and care centers. All CF patients in the U.S. between the ages of 6 and 30 can participate in the registry, if they and/or their parents consent. Using registry data, we are able to compare ourselves to other CF-accredited hospitals and care centers.
Our goal is to provide the best possible clinical care so that children and adolescents with CF have the best lung function and the healthiest outlook as they grow into adults. We monitor our patients’ lung function annually to ensure that we are above the national average in all age categories at all times.
How do we compare to other hospitals?
We have been above the national average for all CF-accredited hospitals and care centers for all age groups since 2008.
What are we doing to improve?
Teams of doctors, nurses and other health professionals review all patients on a regular basis to make sure they are receiving care based on Cystic Fibrosis Foundation clinical guidelines. We also encourage all patients with CF to be seen by their care team at least four times a year, with frequent monitoring of lung function, nutritional health, medications, and physical therapy.