Journal of Cystic Fibrosis
Volume 8, Issue 5 , Pages 348-355 , September 2009

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

  • J.S. Elborn

      Affiliations

    • Respiratory Medicine Research Group, Centre for Infection an Immunity, Queen's University, Belfast City Hospital, Ground Floor, Lisburn Rd, Belfast, BT9 7AB, UK
    • Corresponding Author InformationCorresponding author. Belfast City Hospital, Ground Floor, Lisburn Road, Belfast, BT9 7AB, UK. Tel.: +353 028 9026 3683; fax: +353 028 9026 3546.
    • ,
  • M. Hodson

      Affiliations

    • The Royal Brompton Hospital, Department of Cystic Fibrosis, Sydney Street, London, SW3 6NP, UK
    • ,
  • C. Bertram

      Affiliations

    • Independent Consultant, London, UK

Received 4 November 2008 ,Revised 26 April 2009 ,Accepted 11 May 2009.

References 

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  2. Boyle MP. Adult cystic fibrosis. J Am Med Assoc. 2007;298:1787–1793
  3. Elborn JS, Shale DJ, Britton JR. Cystic fibrosis: current survival and population estimates to the year 2000. Thorax. 1991;46:881–885
  4. Robson M, Abbott J, Webb K, Dodd M, Walsworth-Bell J. A cost description of an adult cystic fibrosis unit and cost analyses of different categories of patients. Thorax. 1992;47:684–689
  5. Bauman U, Stocklossa C, Greiner W, et al. Cost of care and clinical condition in paediatric cystic fibrosis patients. J Cyst Fibros. 2003;2:84–90
  6. Horvais V, Touzet S, Francois S, et al. Cost of home and hospital care for patients with cystic fibrosis followed up in two reference medical centres in France. Int J Technol Assess. 2006;22:525–531
  7. Wildhagen MF, Verheij JB, Hilderink HB, et al. Cost of care patients with cystic fibrosis in The Netherlands in 1990–1. Thorax. 1996;51:298–301
  8. Walters S. Doctor–patient relationship in cystic fibrosis — a patient's perspective. Holist Med. 1990;6:157–162
  9. Mahadeva R, Webb K, Westerbeek RC, et al. Clinical outcome in relation to care in centres specialising in cystic fibrosis: cross sectional study. Br Med J. 1998;316:1771–1775
  10. Johnson C, Butler SM, Konstan MW, Morgan W, Wohl ME. Factors influencing outcomes in cystic fibrosis. A center based analysis. Chest. 2003;123:20–27
  11. Cystic Fibrosis Trust Clinical Standards and Accreditation Group . Standards for the clinical care of children and adults with cystic fibrosis in the UK. London: Cystic Fibrosis Trust. 2001;
  12. Flume PA, O'Sullivan BP, Robinson KA, et al. Cystic fibrosis pulmonary guidelines: chronic medications for maintenance of lung health. Am J Respir Crit Care Med. 2007;176:957–969
  13. Kerem E, Conway S, Elborn S, Heijerman H. Standards of care for patients with cystic fibrosis: a European consensus. J Cyst Fibros. 2005;4:7–26
  14. J.S. Elborn, S. Stenglein, A. Cerulli, M. Hodson, C. Bertram. Implementation of European standards of care for cystic fibrosis — infection management and control. J Cyst Fibros (submitted for publication) [Reference for companion manuscript to be updated at proof stage].
  15. Cystic Fibrosis Worldwide . Towards equal access to appropriate care for all CF patients in Europe. 2008;www.cfww.org/cfe/cfe.awareness-day-equal-access.asp

PII: S1569-1993(09)00059-9

doi: 10.1016/j.jcf.2009.05.004

Journal of Cystic Fibrosis
Volume 8, Issue 5 , Pages 348-355 , September 2009

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