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European Cystic Fibrosis Society Standards of Care: Framework for the Cystic Fibrosis Centre
Open accessAbstract
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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“According to Conway et al., this significantly affects patient safety, and such a treatment team should comprise consultants, a clinical nurse, a microbiologist, a physiotherapist, a dietician, a pharmacist, a clinical psychologist, a social worker, a clinical geneticist, and other healthcare professionals, all of whom should be experienced in the care of patients with CF [4].”
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Metadata
- 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
- ORCID
- Venue
- Journal of Cystic Fibrosis
- Publisher
- Elsevier BV
- Published
- 2014-05
- Volume
- 13
- Pages
- S3-S22
- ISSN
- 1569-1993 (ISSN-L)
- PMC
- PMC7105239
- 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
- hybrid
- doi.org
- Licence
- 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 › Medicine › Pediatrics, Perinatology and Child Health › 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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