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FAQs about the Infection Prevention and Control Guidelines for CF

Lung infections, caused mostly by bacteria, remain a serious and chronic problem for people with cystic fibrosis. The Infection Prevention and Control Guidelines for Cystic Fibrosis provide recommendations to reduce the risk of people with CF getting or spreading dangerous germs in the care center and hospital setting, as well as in everyday life.

Updated Infection Prevention and Control Guidelines were published in July 2014 in Infection Control & Hospital Epidemiology, the official journal of the Society for Healthcare Epidemiology of America (SHEA), and are also available on the Foundation’s website.



What are the Infection Prevention and Control Guidelines for Cystic Fibrosis?

The Guidelines provide recommendations for people with cystic fibrosis, their families and health care professionals on best practices to limit the spread of germs in different settings. The primary goal of the Guidelines is to help people with CF preserve and protect their health.

The Foundation supports the development of guidelines in a range of areas, including infection prevention and control, because they are important for setting the standard of care at CF Foundation-accredited care centers. All guidelines are reviewed and updated based on the latest medical evidence and care and treatment options.

The CF Foundation convened a committee of experts in 2011 to review new evidence in infection prevention and control and update the Guidelines, originally published in 2003. The updated Guidelines have been endorsed by two leading medical organizations dedicated to infection prevention and control: the Society for Healthcare Epidemiology of America (SHEA) and the Association for Professionals in Infection Control and Epidemiology (APIC).

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Where can I find the Guidelines?

The full updated Guidelines have been published in the Society for Healthcare Epidemiology of America’s peer-reviewed journal, Infection Control & Hospital Epidemiology, and are available on the Foundation’s website.

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Why were the Guidelines updated?

Over the last 10 years, new research has shown that there is a greater risk of dangerous germs spreading between people with CF than was previously understood. The CF Foundation sponsored the update of the original Guidelines to help reduce this risk and ensure that the recommendations were based on the latest medical evidence.

The fields of infection prevention and control and of CF care continue to evolve. Advanced medical technologies have given us a better understanding of how certain bacteria can be spread between people with CF and may cause decline in lung function and lead to worsening disease or death. These bacteria include methicillin-resistant Staphylococcus aureus (MRSA), Burkholderia cepacia (B. cepacia), Pseudomonas aeruginosa and nontuberculous mycobacteria (NTM). Some of these bacteria have become resistant to commonly used antibiotics, making them difficult to treat.

The latest research also suggests that the risk is greater than was previously known that some germs can spread through droplets released in the air for a distance of up to 6 feet (2 meters). This can happen when a person coughs or sneezes.

We have also learned more about how infectious diseases, such as MRSA and the SARS and H1N1 influenza viruses, have spread in the general population, and this knowledge has helped inform CF infection prevention and control strategies.

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Who wrote the Guidelines and how were they developed?

The CF Foundation convened a committee of experts in 2011 to update the Infection Prevention and Control Guidelines for Cystic Fibrosis, originally published in 2003. Working together for two years, the committee reviewed relevant research and guidelines by an array of leading public health organizations and professional societies.

The Guidelines Committee consisted of 21 volunteers from all parts of the CF community, including CF physicians, nurses, research scientists, infection control experts, parents of children with CF and an adult with CF. The Committee sought input on the Guidelines from CF care center teams, people with CF and their families, as well as other health care professionals who work in infection prevention and control.

The final Guidelines were endorsed by two leading medical organizations dedicated to infection prevention and control: the Society for Healthcare Epidemiology of America (SHEA) and the Association for Professionals in Infection Control and Epidemiology (APIC). The Guidelines have been published in SHEA’s official journal, Infection Control & Hospital Epidemiology, and are available on the Foundation’s website.

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When will CF care centers implement the Guidelines recommendations?

Many care centers are in the process of implementing the recommendations, and some already have them in place.

For example, in some care centers, CF health care professionals have changed their practices by asking people with CF to wear masks in waiting rooms, hallways and other common gathering areas, and to stay at least 6 feet apart from one another. Center staff have also begun wearing gowns and gloves when caring for all individuals with CF, regardless of their respiratory culture results, to reduce the risk of cross-infection. 

Because of the scope and complexity of the Guidelines, it will take time and effort to implement them. People with CF, their families and friends and CF health care professionals all have a role to play in incorporating the recommendations into clinic and hospital care practices and in everyday life.

The CF Foundation is providing care centers with education materials, including slide presentations, fact sheets, webcasts and posters, to help make sure the clinic environment is as safe as possible and to increase awareness about the steps everybody can take to prevent the spread of germs.

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What are the most significant new recommendations for people with CF and their families?

Important new infection prevention and control recommendations for people with CF and their families and friends include: 

  • Keep a safe 6-foot distance: People with CF should try to stay at least 6 feet (2 meters) away from others with CF and from anyone who has a cold, flu or respiratory infection, in both outdoor and especially indoor settings. The latest research shows that germs can spread as far as 6 feet through droplets released in the air when a person coughs or sneezes.

  • Wash hands: All people with CF and their family and friends should wash their hands with soap and water or clean their hands with an alcohol-based hand gel when there is the possibility that their hands may have come into contact with germs. It is now recommended that everyone wash their hands before entering or leaving a clinic or hospital room and before and after doing pulmonary function tests (PFTs) or chest physiotherapy.

  • Wear a mask: People with CF, regardless of their respiratory tract cultures, should wear a mask in health care settings to prevent germ-carrying droplets from spreading or to prevent becoming infected by germ-carrying droplets.

  • Clean and disinfect nebulizers: During hospital stays and at home, each person with CF should have his or her personal nebulizer and perform respiratory treatment in a separate room from others with CF to avoid spreading germs. The updated Guidelines include recommendations for the care of nebulizers.

For more information, read these tip sheets for people with CF and their families and friends on the new recommendations.

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What are the recommendations for people with CF attending Foundation-sponsored events and meetings?

The key elements of the Foundation’s infection prevention and control recommendations for its events are:

  • Indoor events: Only one person with CF should attend any CF Foundation-sponsored indoor event, meeting or office, including gatherings such as Foundation chapter committee meetings. This person will be invited by the event/meeting organizers or volunteer leaders.

  • Outdoor events: People with CF should try to stay at least 6 feet (2 meters) from each other at any Foundation-sponsored outdoor event or gathering. People with CF can actively keep a safe distance from others with CF, and from people who have a cold, flu or respiratory infection, by voluntarily identifying themselves with a designated identifying symbol (such as a CF Foundation logo pin).
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Do the Guidelines apply to people with CF who have had a lung transplant?

Yes. People with CF who have had lung transplants may still have CF-specific germs in their upper respiratory system (sinuses) that could be spread to others with CF. To minimize the risk of cross-infection, the updated Guidelines recommend that all people with CF follow the same infection prevention and control best practices.

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Do the Guidelines have recommendations for school and daycare settings?

Yes. The Guidelines recommend that schools and daycare centers share infection prevention and control best practices — for example, hand-washing and respiratory hygiene — with all students and school personnel, and also take steps to help everybody follow these practices to reduce the spread of germs. 

Disclosing a diagnosis of CF is a personal decision. People with CF and their parents or legal guardians are not obligated to share this information with school or daycare center personnel. However, the Guidelines recommend that school or daycare center staff be made aware that the individual has CF so they can better protect the health of those with CF.

It is important to know that schools and day care centers must keep medical information confidential unless the individual with CF or the parent or legal guardian chooses to make this information known.

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Do the Guidelines have recommendations on more than one child with CF attending the same school or being in the same classroom? 

Yes. The Guidelines recommend that people with CF attending the same daycare center or school should not be in the same room at the same time unless they live in the same household. The Guidelines also recommend that the individual with CF, parents or legal guardian and CF care center partner with daycare or school personnel to discuss ways to minimize contact between people with CF — for example, assigning students who have CF to separate classrooms and separating them during other scheduled common activities including lunch, physical education and recess.

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Do the Guidelines have recommendations for the workplace?

Although the Guidelines do not specifically address infection prevention and control in the workplace, it is important to do all one can to maintain good health in the workplace. Following the basics of infection prevention and control — hand hygiene, keeping a safe distance and staying up to date on vaccinations — will help reduce the spread of germs. 

Disclosing a diagnosis of CF to an employer is a personal decision. An individual with CF is not required to share this information but may find that enlisting the help of an employer makes it easier to reduce the risk of getting or spreading germs. The employer is legally required to keep an employee’s medical information confidential.

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How do care centers and other health care facilities put the Guidelines recommendations into practice?

Decisions on infection prevention and control practices in CF care centers, hospitals or other health care facilities are the responsibility of the medical and administrative leadership of those institutions.

The Foundation can only recommend infection prevention and control practices — it cannot direct or control practices for other organizations. However, the Foundation shares health education material about infection prevention and control to help care centers implement the Guidelines.

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If my CF care center does not implement the recommendations, what action can I take?

If you are concerned about infection prevention and control practices at your CF care center, speak with a member of your care team or seek out the clinic director, coordinator or social worker. 

Advocating for yourself or your loved one will help ensure that your care center is in the best position to follow the Guidelines and keep everyone safe. Asking a caregiver to wash his or her hands or to wear a gown and gloves may feel uncomfortable at first. Remembering to stay at least 6 feet away from others with CF or wearing a mask may also feel uncomfortable at first. But, by speaking up and collaborating with your CF health care team, you can help protect your health and the health of others with CF. 

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Additional Resources

If you have questions about the Guidelines and infection prevention and control for CF, please write to: infectioncontrol@cff.org.

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The Cystic Fibrosis Foundation is an accredited charity of the Better Business Bureau.