Implementation of European standards of care for cystic fibrosis - provision of care

J Cyst Fibros. 2009 Sep;8(5):348-55. doi: 10.1016/j.jcf.2009.05.004. Epub 2009 Aug 22.


Background: Several guidelines for cystic fibrosis (CF) caregivers exist, but information about their implementation is lacking.

Methods: Adherence to European Consensus Guidelines for CF was studied by sending surveys to named healthcare professionals in 487 CF centres/units. Data were analysed qualitatively.

Results: Data were obtained from 177 CF clinics, providing care for 21,177 patients (33% response rate). Access to specialist healthcare professionals was good according to 80% of respondents, although only 59% reported access to specialist pharmacists. Of the respondents, 16% reported unlimited access to inpatient CF beds, however 22% reported a lack of availability of immediate care. Most respondents (84%) reviewed their patients quarterly as outpatients. Shared-care models were used by 84% of respondents. Availability and adequacy of funding presented an issue for many, although 8% of respondents indicated that key funding was derived from CF charities.

Conclusions: The respondents demonstrated a high degree of implementation of European Consensus Guidelines. However, areas for improvement include shared care, access to care and funding inequalities.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Caregivers
  • Cystic Fibrosis / therapy*
  • Europe
  • Guideline Adherence*
  • Health Care Surveys
  • Humans
  • Patient Care / standards*
  • Practice Guidelines as Topic*
  • Surveys and Questionnaires