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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Comprehensive medical care provided by a properly organized multidisciplinary team significantly affects patient safety in cystic fibrosis.
“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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Was ist gesichert in der Therapie der Mukoviszidose?
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Self-citationAutomated tube voltage selection in pediatric non-contrast chest CT
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Microbiological evaluation of UV disinfection effectiveness in a specialist cystic fibrosis clinic
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Primary ciliary dyskinesia: the patients grow up
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Role of pharmacists in the context of rare diseases: a scoping review protocol
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Parent's report on oral health‐related quality of life of children with cystic fibrosis
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Aerosol delivery practice in Italian Cystic Fibrosis centres: a national survey
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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
- 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 › 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
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
What counts as a claim ›How we measure confidence ›How we check this ›
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