The Cystic Fibrosis Foundation (CFF) has published recommendations regarding infection prevention and control practices for patients with CF. Read the "Infection Prevention and Control Guidelines for Cystic Fibrosis: 2013 Update".
These recommendations are available to CF Centers to use as a guideline in caring for their patients with cystic fibrosis. The recommendations are qualified as a “work in progress” because as new information on infection prevention and control becomes available, changes in the way we do things may be necessary.
Infection prevention and control practices are especially important to follow for people who have CF. People with CF are born with an altered CF gene that causes an abnormal movement of salt and water in and out of the cells that line their lungs. As a result, the mucus layer lining the lungs is thick and sticky, and it is more difficult to clear this mucus from the lungs. Germs like this environment.
Germs are everywhere. Germs are the bacteria, viruses, molds and fungi that make us sick if we “catch” them. Viruses, for example, are germs that cause the common cold. Everyone catches a cold now and then, and it generally runs its course without too much trouble, even for a person with cystic fibrosis. However, a person with CF is more vulnerable to bacterial growth and infection, so it is important to try and prevent catching or spreading germs as best you can.
There are many types of germs. The germs called Pseudomonas aeruginosa and Burkholderia, for example, are bacteria that get particular attention in CF. Pseudomonas aeruginosa shows up in many places and is commonly found in the environment, especially wet places. It can be found in contaminated respiratory equipment, on surfaces, in sinks and in showers. For reasons that are not known, Pseudomonas is a common lung infection among people with CF. According to the 2016 CFF Patient Registry Data Report, about 20% of children less than two years of age and 50% of 18-year-olds have Pseudomonas in their lungs. And in most cases, it is unknown where the initial source of a Pseudomonas infection came from.
Burkholderia is a germ that is found in the natural environment and infects plants but also people. There are several species of Burkholderia referred to as “B.cepacia complex” and some species appear to be more harmful than others. It can infect the lungs of people with CF and has been found on contaminated respiratory equipment. In the United States, less than 3% of people with CF are infected with Burkholderia, which makes it a less common bacterial infection in CF. However, it is very serious because it can lower lung function quickly and can be easily passed between people with CF.
The goal in practicing infection prevention and control measures is to minimize exposure to germs. Less exposure means less chance of infection. Your healthcare team at Lurie Children's want to work with you to reduce the spread of germs. There are ways to do this in the outpatient setting, in the hospital, at school, at home and in public.