Cited by 232Cystic Fibrosis Research AdvancesClinical practice guidelines implementationAdolescent and Pediatric Healthcare

European Cystic Fibrosis Society Standards of Care: Framework for the Cystic Fibrosis Centre

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Conway, Steven, Balfour-Lynn, Ian M., De Rijcke, Karleen, Drevinek, Pavel, Foweraker, Juliet, Havermans, Trudy, Heijerman, Harry, Lannefors, Louise +10 more·2014·Journal of Cystic Fibrosis

Abstract

A significant increase in life expectancy in successive birth cohorts of people with cystic fibrosis (CF) is a result of more effective treatment for the disease. It is also now widely recognized that outcomes for patients cared for in specialist CF Centres are better than for those who are not. Key to the effectiveness of the specialist CF Centre is the multidisciplinary team (MDT), which should include consultants, clinical nurse specialist, microbiologist, physiotherapist, dietitian, pharmacist, clinical psychologist, social worker, clinical geneticist and allied healthcare professionals, all of whom should be experienced in CF care. Members of the MDT are also expected to keep up to date with developments in CF through continued professional development, attendance at conferences, auditing and involvement in research. Specialists CF Centres should also network with other Centres both nationally and internationally, and feed Centre data to registries in order to further the understanding of the disease. This paper provides a framework for the specialist CF Centre, including the organisation of the Centre and the individual roles of MDT members, as well as highlighting the value of CF organisations and disease registries.

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  1. [2]Mahadeva R. Webb K. Westerbeek R.C. Carroll N.R. Dodd M.E. Bilton D. Clinical outcome in relation to care in Centres specialising in cystic fibrosis: cross sectional study BMJ 316 1998 1771 1775 9624062 PMC28574
  2. [14]Bolyard D.R. Sexuality and cystic fibrosis MCN Am J Matern Child Nurs 26 2001 39 41 11198454
  3. [18]Madge S. Bryon M. A model for transition of care in cystic fibrosis J Pediatr Nurs 17 2002 283 288 12219328
  4. [35]Holland A.E. Button B.M. on behalf of the International Physiotherapy Group for Cystic Fibrosis Physiotherapy for cystic fibrosis in Australia: knowledge and acceptance of the consensus statement recommendations Respirology 18 2013 652 656 23240864

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Authors
Conway, S., Balfour-Lynn, I. M., De Rijcke, K., Drevinek, P., Foweraker, J., Havermans, T., Heijerman, H., Lannefors, L., Lindblad, A., Macek, M., Madge, S., Moran, M., Morrison, L., Morton, A., Noordhoek, J., Sands, D., Vertommen, A., & Peckham, D.
Affiliations
  • Leeds Teaching Hospitals NHS Trust (GB)
  • Royal Brompton Hospital (GB)
  • Papworth Hospital NHS Foundation Trust (GB)
  • Universitair Ziekenhuis Leuven (BE)
  • Haga Hospital (NL)
  • Copenhagen University Hospital (DK)
  • Drottning Silvias barn- och ungdomssjukhus (SE)
  • St. Vincent's University Hospital (IE)
  • Gartnavel General Hospital (GB)
  • St James's University Hospital (GB)
  • Instytut Matki i Dziecka (PL)
Corresponding author
Conway, Steven
Venue
Journal of Cystic Fibrosis
Publisher
Elsevier BV
Published
2014-05
Volume
13
Pages
S3-S22
ISSN
1569-1993 (ISSN-L)
OpenAlex
W2151436444
Cited by
232
References
88
Citations by year
2026: 8 · 2025: 16 · 2024: 17 · 2023: 39 · 2022: 15 · 2021: 18 · 2020: 19 · 2019: 17 · 2018: 17 · 2017: 17 · 2016: 25 · 2015: 14 · 2014: 9
FWCI
3.71
Type
journal article
Language
en
Open access
Locations
  • Journal of Cystic Fibrosis (publishedVersion, cc-by-nc-nd)
  • PubMed Central (publishedVersion)
  • PubMed (publishedVersion)
  • White Rose Research Online (University of Leeds, The University of Sheffield, University of York) (acceptedVersion)
Topics
  • Health Sciences › Medicine › Pulmonary and Respiratory Medicine › Cystic Fibrosis Research Advances
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Clinical practice guidelines implementation
  • Health Sciences › Health Professions › Speech and Hearing › Adolescent and Pediatric Healthcare
Keywords
multidisciplinary team, standard of care, clinical nurse specialists, disease registries, professional development, patient outcomes, life expectancy
MeSH terms
Adolescent, Adult, Child, Child, Preschool, Cystic Fibrosis, Europe, Health Services Accessibility, Hospitals, Special, Humans, Patient Care Team, Societies, Medical, Young Adult, Standard of Care

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