Format

Send to

Choose Destination
J Cyst Fibros. 2014 May;13 Suppl 1:S43-59. doi: 10.1016/j.jcf.2014.03.011.

European Cystic Fibrosis Society Standards of Care: Quality Management in cystic fibrosis.

Author information

1
University Children's Hospital, Tübingen, Germany. Electronic address: martin.stern@med.uni-tuebingen.de.
2
French CF QIP, Paris, France. Electronic address: dominiquepougheon@orange.fr.
3
CFF Piemonte, Città della salute e della scienza, Torino, Italy. Electronic address: ebignamini@cittadellasalute.to.it.
4
Hospital for Sick Children, University of Toronto, Canada. Electronic address: mary.corey@sickkids.ca.
5
Mukoviszidose eV, Berlin, Germany. Electronic address: bdembski@muko.info.
6
Division of Pulmonary and Critical Care Medicine, Department of Medicine, University of Washington Medical Centre, Seattle, WA, USA. Electronic address: Cgoss@medicine.washington.edu.
7
CF Center, Rigshospitalet, Copenhagen, Denmark. Electronic address: pressler@mail.dk.
8
National Expertise CF Center, Nantes-Roscoff, France. Electronic address: gilles.rault@perharidy.fr.
9
Dipartimento di Scienze Cliniche e di Comunità, Università degli Studi di Milano, Milan, Italy. Electronic address: laura.viviani@unimi.it.
10
School of Medicine, Dentistry and Biomedical Sciences, Queen's University of Belfast, Northern Ireland, UK.
11
Cystic Fibrosis Center, Azienda Ospedaliera Universitaria Integrata, Verona, Italy.

Abstract

Since the earliest days of cystic fibrosis (CF) treatment, patient data have been recorded and reviewed in order to identify the factors that lead to more favourable outcomes. Large data repositories, such as the US Cystic Fibrosis Registry, which was established in the 1960s, enabled successful treatments and patient outcomes to be recognized and improvement programmes to be implemented in specialist CF centres. Over the past decades, the greater volumes of data becoming available through Centre databases and patient registries led to the possibility of making comparisons between different therapies, approaches to care and indeed data recording. The quality of care for individuals with CF has become a focus at several levels: patient, centre, regional, national and international. This paper reviews the quality management and improvement issues at each of these levels with particular reference to indicators of health, the role of CF Centres, regional networks, national health policy, and international data registration and comparisons.

KEYWORDS:

CF registries; Models of care; Outcomes in CF; Quality management; Standards

PMID:
24856777
DOI:
10.1016/j.jcf.2014.03.011
[Indexed for MEDLINE]
Free full text

Supplemental Content

Full text links

Icon for Elsevier Science
Loading ...
Support Center