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

Title

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

Creator

Elborn JS; Hodson M; Bertram C

Publisher

Journal Of Cystic Fibrosis

Date

2009

Subject

Humans; Practice Guidelines as Topic; Health Care Surveys; Questionnaires; Guideline Adherence; Europe; Adolescent Transitions; caregivers; Cystic Fibrosis/therapy; Patient Care/standards

Description

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.
2009

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Type

Journal Article

Citation List Month

Backlog

Pages

348-355

Issue

5

Volume

8

Citation

Elborn JS; Hodson M; Bertram C, “Implementation of European standards of care for cystic fibrosis - provision of care,” Pediatric Palliative Care Library, accessed September 28, 2021, https://pedpalascnetlibrary.omeka.net/items/show/14388.

Social Bookmarking