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

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


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.

Publication types

  • Review

MeSH terms

  • Adolescent
  • Adult
  • Child
  • Child, Preschool
  • Cystic Fibrosis / diagnosis*
  • Cystic Fibrosis / therapy*
  • Europe
  • Female
  • Health Policy*
  • Humans
  • Infant
  • Infant, Newborn
  • Male
  • Quality of Health Care*
  • Registries*
  • Societies, Medical
  • Standard of Care*
  • Young Adult