Differences between CF Centres

Question

Hello
Will there one day be a "consensus" between CF Centers? Indeed through testimonials from parents of CF children it’s noticable that each CF Center allows or prohibits some activities or travel. Opinions may even differ in a given CF Center ... Why has one child the right to go to Tunisia and another is prohibited from Portugal ... and it’s the same thing about pool ... horse riding ... Those activities are prohibited by doctors in some CF Centers but allowed by doctors in other CF Centers who seem more tolerant with the families of patients. It’s not easy to navigate even if we know that each patient develops its own disease! thank you

Answer

Hello,
Your question is important, but it already contains part of the answer.
On the one hand, because each patient develops various symptoms associated with the disease (allergies, infections, complications ...), has own weaknesses, then advice or encouragement given by the healthcare team on dailylife activities reflect this individual and/or familial context.
On the other hand, there are no validated recommendations on certain issues: if physical activity/sport is generally recommended, it has to be tailored to the health status, some activities posing risks to the health of the patient. The key is to have in mind the notion of shared responsibility between the healthcare team and the patient and his family for taking the risks associated with certain activities. But in order to practice an informed responsibility, one needs to be fully informed, to have the ability to prevent and manage the risks associated with certain activities or movements in conditions poorly adapted to CF patients (country with hot weather, for example) .
The CF team has the responsibility to inform and educate the patient and his parents through therapeutic education sessions (supplementation of water and salt in case of hot wether, hygiene, identify warning signs ... ) and adaptation to the conditions of daily life (coping skills). Patient education has even more interest if it meets specific patient’s needs, part of his plan of life, at short or medium term: a sporting activity or a trip abroad in your example.
Of course, if the CF team could positively evaluate the patient’s and his/her family skills in various aspects of care and daily life, a favorable opinion can be given to the practice of certain activities while in the otherwise, the team will have reservations for the same activity.
In conclusion, each patient/family differs not only by the symptoms and complications associated with the disease, but also by itself and adaptation skills to the conditions of life. In obvious risk situations the CF team has the responsibility to inform, educate, assess the skills to accompany everyone the fairiest way in his/her life with CF.
Medicine has to be personalized.
Hope that answers your question.
Regards

Gilles RAULT, MD
CF Center of Roscoff, France

24.03.2014