| Management of primary ciliary dyskinesia in European children: recommendations and clinical practice. | |
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MedLine Citation:
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PMID: 22282549 Owner: NLM Status: Publisher |
Abstract/OtherAbstract:
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The European Respiratory Society task force on primary ciliary dyskinesia (PCD) in children recently published recommendations for diagnosis and management. This paper compares these recommendations with current clinical practice in Europe.Questionnaires were returned by 194 paediatric respiratory centres caring for PCD patients in 26 countries. In most countries, PCD care was not centralised, with a median of 4 (IQR 2-9) patients treated per centre. Overall, 90% of centres had access to nasal or bronchial mucosal biopsy. Samples were analyse by electron microscopy (77%), ciliary function tests (57%) or both (84%). Nasal nitric oxide for screening was used in 46% of centres, saccharine tests in 36%. Treatment approaches varied widely, both within and between countries. European region, size of centre and the country's general government expenditure on health partly defined availability of advanced diagnostic tests and choice of treatments.In conclusion, we found substantial heterogeneity in management of PCD within and between countries and poor concordance with current recommendations. This demonstrates how essential it is to standardise management and decrease inequality between countries. Our results also demonstrate the urgent need for research: to simplify PCD diagnosis, to understand the natural history and to test the effectiveness of interventions. |
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Authors:
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M-P F Strippoli; T Frischer; A Barbato; D Snijders; E Maurer; J S A Lucas; E Eber; B Karadag; P Pohunek; Z Zivkovic; A Escribano; C O'Callaghan; A Bush; C E Kuehni |
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Publication Detail:
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Type: JOURNAL ARTICLE Date: 2012-1-26 |
Journal Detail:
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Title: The European respiratory journal : official journal of the European Society for Clinical Respiratory Physiology Volume: - ISSN: 1399-3003 ISO Abbreviation: - Publication Date: 2012 Jan |
Date Detail:
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Created Date: 2012-1-27 Completed Date: - Revised Date: - |
Medline Journal Info:
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Nlm Unique ID: 8803460 Medline TA: Eur Respir J Country: - |
Other Details:
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Languages: ENG Pagination: - Citation Subset: - |
Affiliation:
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University of Bern, Bern, Switzerland. |
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From MEDLINE®/PubMed®, a database of the U.S. National Library of Medicine
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