title: [Analysis of hospital outpatient care of a rare disease: cystic fibrosis].
abstract: BACKGROUND
  Following the generalization of neonatal screening, the French CF Care Network has become structured around 45 qualified centres, the French CF Society, 2 national expertise centres, the Patient Registry and the National Protocol of CF Care in collaboration with the Vaincre Ia Mucoviscidose patient association. This organization and progress in treatment have resulted in the outpatient follow-up of a growing number of patients. Since 2010, the CF Network representatives have been conducting an assessment of outpatient follow-up to identify difficulties in complying with national and international clinical practice guidelines.
  
  
  METHODS
  Two complementary quantitative and qualitative approaches were used to characterize and quantify the activities carried out by professionals in 8 centres both for outpatient visits and patient care coordination.
  
  
  RESULTS
  Two thirds of the 1,4 75 patients followed in the centres were managed over the period, less than half (40%) of them attended outpatient visits, but all of them were concerned by care coordination activities, whether or not they were related to the visit. The core team (doctor, nurse, physio-therapist) is not mobilized at each scheduled outpatient visit as recommended. Professionals devote 40% less time for follow-up in adult centres than in paediatric centres, all activities included. The multidisciplinary outpatient visit process is complicated by the lack of available resources and the unsuitability of certain premises.
  
  
  CONCLUSIONS
  With a constantly growing number of patients, CF centres are struggling to comply with good clinical practice and meet the specific needs of adult patients and transplant recipients. An upgrade of professional resources and an update of the National Protocol appear to be necessary.
authors.forename: Gilles
authors.initials: G
authors.lastname: Rault
authors.forename: Dominique
authors.initials: D
authors.lastname: Pougheon
authors.forename: Jean-Claude
authors.initials: JC
authors.lastname: Moisdon
authors.forename: Michel
authors.initials: M
authors.lastname: Pépin
authors.forename: Frédéric
authors.initials: F
authors.lastname: Kletz
authors.forename: Gabriel
authors.initials: G
authors.lastname: Bellon
authors.forename: Isabelle
authors.initials: I
authors.lastname: Durieu
authors.forename: Pierre
authors.initials: P
authors.lastname: Lombrail
mesh_terms: D000328:Adult; D000553:Ambulatory Care / Q000379:methods*; D003299:Cooperative Behavior; D003550:Cystic Fibrosis / Q000628:therapy*; D005500:Follow-Up Studies; D006301:Health Services Needs and Demand; D006801:Humans; D033183:Interdisciplinary Communication; D010348:Patient Care Team / Q000458:organization & administration; D017410:Practice Guidelines as Topic; D011787:Quality of Health Care; D066027:Transplant Recipients