CF camps

Question

Why are CF camps no longer allowed? You can catch pseudomonas bacteria from other people (non CF) as well, isn’t it? Also, I can’t find clear (general) ‘conduct’ rules for people with CF. Do you know where I can find them?

Answer

Hello,

You asked 3 questions, we will provide you a reply to your 3 questions.

1. Why are CF camps not allowed anymore?

CF camps were cancelled a couple of years ago because of the risk of transmitting infection between people with CF (the so called cross- infection). This decision still makes sense. Not only CF camps are being discouraged, in fact all meetings between people with CF are being discouraged . Therefore in most countries in Europe, North-America and Australia these meetings are no longer being organised. The reason is prevention of cross- infection by contact between people with CF. The last 10 years we learned many new things about the behaviour and pathologenicity of the typical CF bacteria: Pseudomonas aeruginosa, Burkholderia cepacia and Methicillin Resistent Staphylococcus aureus (MRSA).
There is sufficient evidence that an infected CF patient can cross-infect a non infected CF patient either by to direct contact or via coughing. These infections are harmful and after a certain period can lead to lung damage. They demand a complex treatment. It is thus logical to try to limit the risk of acquiring a difficult to treat infection, by advising against direct contact between people with CF.
Since patients and caregivers have been informed about these risks and measures have been taken (also called segregation of patients), cross infections have decreased markedly.
Segregation measures have become standard practice and are implemented in CF centres; they include that patients cannot share rooms, that patients with and without Pseudomonas infection are seen on different clinic days...

2.You can acquire the Pseudomonas bacteria from other people (non CF) as well, can’t you?

NO, people with CF do not get infected with Pseudomonas by contact with healthy people. Bacteria such as Pseudomonas aeruginosa and Burkholderia cepacia (which can cause serious harm) exist in the environment but do not cause disease in healthy people. Typically, but -as yet still not fully understood-, these germs cause chronic infection of the airways mainly in people with CF. So far, we cannot completely prevent these infection but we can delay their onset. These germs also play a role in (rare) other diseases such as skin infection in patients with burns, infections in intensive care units,... But in these situations, there is no risk for accidental cross-infection to patients with CF.

3. I can’t find clear (general) guidelines for people with CF. Do you know where I can find them?

Since your questions concerned the risk of cross-infection, I reply in this context of cross-infection.
General guidelines for patients with CF can be given, but will always need to be tailored to the individual. In the ‘rules of conduct’ to prevent cross-infection, we need to stress good (cough) hygiene, taking care of devices, strict patient segregation etc. Common sense and responsible behaviour play a major role.
The above mentioned typical CF bacteria are quite tough. They can survive for at least 24 hours, on surfaces and objects like PC’s, latches.. They are resistant to normal cleaning and disinfection products. They thrive well in a humid environment. They spread from person to person by ordinary contact, such as shaking hands, living in the same room, using the same eating utensils...things which are impossible to avoid during direct contact.
Certain rules of conduct help to reduce the risk of cross infection: no hand shaking, cough hygiene, correct cleaning of nebulizers, avoiding damp rooms. We suggest that you discuss the rules for your daily life with your CF doctor. You can also consult official websites such as the sites from the Belgian and Dutch CF associations (Belgische Vereniging voor Strijd tegen Mucoviscidose (www.muco.be), de Nederlandse Cystic Fibrosis Stichting (www.ncfs.nl)), the North-American CFF (www.cff.org) and the European CF Foundation (www.ecfs.eu). Contact your national CF association.

Strict segregation has some disadvantages: not being able to share experiences with other patients can make you feel ‘socially’ isolated (e.g during in hospital stay). Of course, meeting healthy people is not a problem and should be stimulated. Info meetings are currently mainly organized for families. Luckily contact between patients remains possible via the internet!
Segregation measures are not ‘easy’. They can make you feel ‘stigmatized’ and isolated, but experience learns that patients and parents understand the rules, that they rely on their clinic to implement these rules thereby creating a safe environment during hospital visits.
Dr Anne Malfroot

31.10.2011