About CF

Question

Hello I am currently in first class in high school and as part of my personal work supervised I want to know for how long the care given to people with cystic fibrosis are in place?

Answer

Hello,
In the 1960s, the diagnosis of CF was based, initially, on clinical examination: many fatty stools, a low weight and size, and recurrent bronchitis. A sweat test was then done to confirm the diagnosis. Then the child was followed in hospitals or in a few specialized centers like Roscoff and Giens in France or by a physician in private practice. Since the discovery of the cystic fibrosis gene in 1989, regional initiatives for a screening organization and care for these patients were organized in some regions. Elsewhere, patients were followed after diagnosis in hospitals or by a physician in private practice.
In 2002, systematic screening at birth for cystic fibrosis was established in France. The generalization of this screening was accompanied by follow-up recommendations in CF centers, created by the Ministry of Health in 2001: see Circular 2001-502 October 22, 2001. The different roles of a CF center are:
The confirmation and explanation of the diagnosis for the patients and their families
The implementation of national guidelines validated.
An appropriate response to patients' medical problems 24 hours every 24 days of the year
The coordination of all caregivers
The organization of the transfer pediatric to adult
Therapeutic education of patients and their families
The practical training of the paramedics (freelance nurses, physiotherapists ...)
The initial and ongoing training of health professionals involved: participation in national and international conferences, publications in scientific journals, information sessions ...
Research activity or participation in clinical research protocols
The establishment of an evaluation process of the CF center organization ...

Patients with CF are now followed up and supported in these specialized centers (adult and pediatric) with coordinating the implementation of home care.

I hope that answers your request, good luck for your schoolwork
Best regards
Marythé Kerbrat

29.11.2011