Analyse de la prise en charge hospitalière ambulatoire de la mucoviscidose (notice n° 1003678)
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| 005 - DATE AND TIME OF LATEST TRANSACTION | |
| control field | 20250125134731.0 |
| 041 ## - LANGUAGE CODE | |
| Language code of text/sound track or separate title | fre |
| 042 ## - AUTHENTICATION CODE | |
| Authentication code | dc |
| 100 10 - MAIN ENTRY--PERSONAL NAME | |
| Personal name | Rault, Gilles |
| Relator term | author |
| 245 00 - TITLE STATEMENT | |
| Title | Analyse de la prise en charge hospitalière ambulatoire de la mucoviscidose |
| 260 ## - PUBLICATION, DISTRIBUTION, ETC. | |
| Date of publication, distribution, etc. | 2015.<br/> |
| 500 ## - GENERAL NOTE | |
| General note | 27 |
| 520 ## - SUMMARY, ETC. | |
| Summary, etc. | Introduction : Après généralisation du dépistage néo-natal, la filière mucoviscidose s’est structurée autour de 45 centres de ressources et de compétences, de la Société française de la mucoviscidose, de deux centres de référence, d’un registre qualifié et d’un protocole national diagnostic soins, en collaboration avec l’association Vaincre la mucoviscidose. Organisation et progrès thérapeutiques se sont traduits par l’augmentation de la file active des centres et de leur activité ambulatoire. Les partenaires mènent depuis 2010 un état des lieux de la prise en charge et des difficultés des centres à se conformer aux bonnes pratiques de soins. Méthodes : Deux approches, quantitative et qualitative, ont porté sur l’activité des professionnels dans huit centres (suivant au total 1 475 patients) au cours des venues ambulatoires et pour la coordination des soins à domicile. Résultats : Deux tiers des 1 475 patients ont été pris en charge sur la période ; parmi eux moins de la moitié (40 %) est venue au centre, mais la coordination des soins les a tous concernés. Le socle de base (médecin, infirmière, kinésithérapeute) n’est pas mobilisé à chaque venue programmée. Les temps mobilisés dans les centres adultes sont de 40 % inférieurs à ceux des centres pédiatriques toutes activités confondues. L’organisation du processus de consultation pluridisciplinaire est compliquée par la disponibilité insuffisante des ressources et l’inadaptation de certains locaux. Discussion : Les centres sont en difficulté pour appliquer les recommandations à une file active en constante augmentation, répondre aux besoins nouveaux des patients adultes et des patients transplantés. Une mise à niveau des ressources et du protocole apparaît nécessaire. |
| 520 ## - SUMMARY, ETC. | |
| Summary, etc. | Analysis of hospital outpatient care of a rare disease : cystic fibrosis Introduction : 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 la 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 1,475 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. Discussion : 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. |
| 690 ## - LOCAL SUBJECT ADDED ENTRY--TOPICAL TERM (OCLC, RLIN) | |
| Topical term or geographic name as entry element | mucoviscidose |
| 690 ## - LOCAL SUBJECT ADDED ENTRY--TOPICAL TERM (OCLC, RLIN) | |
| Topical term or geographic name as entry element | qualité des soins |
| 690 ## - LOCAL SUBJECT ADDED ENTRY--TOPICAL TERM (OCLC, RLIN) | |
| Topical term or geographic name as entry element | soins ambulatoires |
| 690 ## - LOCAL SUBJECT ADDED ENTRY--TOPICAL TERM (OCLC, RLIN) | |
| Topical term or geographic name as entry element | gestion continue qualité |
| 690 ## - LOCAL SUBJECT ADDED ENTRY--TOPICAL TERM (OCLC, RLIN) | |
| Topical term or geographic name as entry element | total quality management |
| 690 ## - LOCAL SUBJECT ADDED ENTRY--TOPICAL TERM (OCLC, RLIN) | |
| Topical term or geographic name as entry element | cystic fibrosis |
| 690 ## - LOCAL SUBJECT ADDED ENTRY--TOPICAL TERM (OCLC, RLIN) | |
| Topical term or geographic name as entry element | quality of health care |
| 690 ## - LOCAL SUBJECT ADDED ENTRY--TOPICAL TERM (OCLC, RLIN) | |
| Topical term or geographic name as entry element | ambulatory care |
| 700 10 - ADDED ENTRY--PERSONAL NAME | |
| Personal name | Pougheon, Dominique |
| Relator term | author |
| 700 10 - ADDED ENTRY--PERSONAL NAME | |
| Personal name | Moisdon, Jean-Claude |
| Relator term | author |
| 700 10 - ADDED ENTRY--PERSONAL NAME | |
| Personal name | Pépin, Michel |
| Relator term | author |
| 700 10 - ADDED ENTRY--PERSONAL NAME | |
| Personal name | Kletz, Frédéric |
| Relator term | author |
| 700 10 - ADDED ENTRY--PERSONAL NAME | |
| Personal name | Bellon, Gabriel |
| Relator term | author |
| 700 10 - ADDED ENTRY--PERSONAL NAME | |
| Personal name | Durieu, Isabelle |
| Relator term | author |
| 700 10 - ADDED ENTRY--PERSONAL NAME | |
| Personal name | Lombrail, Pierre |
| Relator term | author |
| 786 0# - DATA SOURCE ENTRY | |
| Note | Santé Publique | 27 | 3 | 2015-08-13 | p. 363-372 | 0995-3914 |
| 856 41 - ELECTRONIC LOCATION AND ACCESS | |
| Uniform Resource Identifier | <a href="https://shs.cairn.info/revue-sante-publique-2015-3-page-363?lang=fr&redirect-ssocas=7080">https://shs.cairn.info/revue-sante-publique-2015-3-page-363?lang=fr&redirect-ssocas=7080</a> |
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