| Title: |
L’expérience professionnelle du médecin hospitalier à l’épreuve du dépistage : ; L’expérience professionnelle du médecin hospitalier à l’épreuve du dépistage :: le cas de l’annonce du diagnostic de la mucoviscidose |
| Authors: |
Langeard, Chloé; Minguet, Guy; Guéganton, Laetitia; Cam, Pierre; Faquet, Christine; Lombrail, Pierre; Rault, Gilles |
| Contributors: |
Groupe de Recherche Angevin en Economie et Management (GRANEM); Université d'Angers (UA)-AGROCAMPUS OUEST-Institut National de l'Horticulture et du Paysage; Laboratoire d'économie et de management de Nantes Atlantique (LEMNA); Institut d'Économie et de Management de Nantes - Institut d'Administration des Entreprises - Nantes (IEMN-IAE Nantes); Université de Nantes (UN)-Université de Nantes (UN); Mines Nantes (Mines Nantes); Centre de Ressources et de Compétences de la Mucoviscidose (CRCM); Centre de Perharidy-Cellule de Coordination du Réseau Mucoviscidose (CECOREM); Université de Nantes (UN); chu bobigny |
| Source: |
ISSN: 0035-2985. |
| Publisher Information: |
CCSD; La documentation française |
| Publication Year: |
2012 |
| Collection: |
Université de Nantes: HAL-UNIV-NANTES |
| Subject Terms: |
expérience; diagnostic; dépistage; annonce; [SHS.SOCIO]Humanities and Social Sciences/Sociology |
| Description: |
International audience ; In what ways does biomedical technology such as systematic neonatal screening transform the process of announcing an incurable disease? This question is examined by means of a case study based on cystic fibrosis, a rare, lethal, genetically transmitted congenital disease with a variable and complex clinical expression and prognosis. In France, a systematic Neonatal Cystic Fibrosis Screening Programme (CF NBS) was instituted by the Public Authorities from 2002. This contribution aims at characterising the impact of neonatal screening on CF diagnosis through the announcement process. The study was conducted by questionnaire and interview among specialised care teams. The diagnosis is considered as a process; a sequence of events leading from presumption to proof that is progressively established during the course of the announcement process. This experience is examined from three different viewpoints: organisational, relational and technological. It reveals the paediatrician as orchestrator of the announcement process. In conclusion, the diagnostic process proves to be doubly revealing: the principle of clinical uncertainty in the diagnosis is shared by the parents, the neonate and the health professionals; the change in information content generated by2/19 neonatal screening results in a reorganisation of consultation practices and alters the way disease is experienced. ; La mucoviscidose occupe, parmi les maladies génétiques rares, une place particulière par sa relative fréquence (1/4600 naissances) et sa complexité : son expression clinique et pronostique est extrêmement variable et progressive. Il en résulte que le pronostic individuel est difficilement prévisible au moment du diagnostic. A ce jour, il n'existe pas de traitement curatif de l'affection, les traitements sont symptomatiques ou préventifs et reposent essentiellement sur la prise en charge respiratoire, digestive et nutritionnelle. Pourtant, depuis 2002, les pouvoirs publics ont mis en place le dépistage néonatal ... |
| Document Type: |
article in journal/newspaper |
| Language: |
French |
| Availability: |
https://hal.science/hal-01373375; https://hal.science/hal-01373375v1/document; https://hal.science/hal-01373375v1/file/article_RFAS.pdf |
| Rights: |
info:eu-repo/semantics/OpenAccess |
| Accession Number: |
edsbas.77CB3DAD |
| Database: |
BASE |