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

J S Elborn, M Hodson, C Bertram
Journal of Cystic Fibrosis: Official Journal of the European Cystic Fibrosis Society 2009, 8 (5): 348-55

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.


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