Overcoming challenges in the management of primary ciliary dyskinesia: the UK model
Overcoming challenges in the management of primary ciliary dyskinesia: the UK model
Primary ciliary dyskinesia (PCD) is an autosomal recessive disease associated with bronchiectasis, chronic rhinosinusitis, infertility and situs inversus. Estimates of prevalence vary widely, but is probably between 1:10,000- 1:40,000 in most populations. A number of observational studies indicate that access to services to diagnose and manage patients with PCD vary both between and within countries. Diagnosis is often delayed and frequently missed completely. The prognosis of patients with PCD is variable, but evidence suggests that it is improved by early diagnosis and specialist care. This article briefly reviews the literature concerning PCD and the evidence that specialist care will improve healthcare outcomes. The article specifically refers to a new national service in the UK.
primary ciliary dyskinesia, co-ordinated care, multi-disciplinary team, equity of access
Lucas, Jane S
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Chetcuti, Philip
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Copeland, Fiona
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Hogg, Claire
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Kenny, Tom
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Moya, Eduardo
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O'Callaghan, Christopher
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Walker, Woolf T
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Lucas, Jane S
5cb3546c-87b2-4e59-af48-402076e25313
Chetcuti, Philip
c2f54e84-ed63-43fa-a0e8-2334a4680d13
Copeland, Fiona
64d779cf-20e4-461d-abae-0906e105a8bf
Hogg, Claire
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Kenny, Tom
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Moya, Eduardo
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O'Callaghan, Christopher
b985540d-eac0-4308-95d3-ffe156867d45
Walker, Woolf T
b9981f69-8c4e-441d-93d7-d45e65341576
Lucas, Jane S, Chetcuti, Philip, Copeland, Fiona, Hogg, Claire, Kenny, Tom, Moya, Eduardo, O'Callaghan, Christopher and Walker, Woolf T
(2013)
Overcoming challenges in the management of primary ciliary dyskinesia: the UK model.
Paediatric Respiratory Reviews.
(doi:10.1016/j.prrv.2013.04.007).
(PMID:23764568)
(In Press)
Abstract
Primary ciliary dyskinesia (PCD) is an autosomal recessive disease associated with bronchiectasis, chronic rhinosinusitis, infertility and situs inversus. Estimates of prevalence vary widely, but is probably between 1:10,000- 1:40,000 in most populations. A number of observational studies indicate that access to services to diagnose and manage patients with PCD vary both between and within countries. Diagnosis is often delayed and frequently missed completely. The prognosis of patients with PCD is variable, but evidence suggests that it is improved by early diagnosis and specialist care. This article briefly reviews the literature concerning PCD and the evidence that specialist care will improve healthcare outcomes. The article specifically refers to a new national service in the UK.
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Accepted/In Press date: 13 June 2013
Keywords:
primary ciliary dyskinesia, co-ordinated care, multi-disciplinary team, equity of access
Organisations:
Clinical & Experimental Sciences
Identifiers
Local EPrints ID: 353773
URI: http://eprints.soton.ac.uk/id/eprint/353773
ISSN: 1526-0550
PURE UUID: 83d0acb7-c8a5-4f4b-a212-00e8eabd643b
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Date deposited: 17 Jun 2013 10:53
Last modified: 15 Mar 2024 03:12
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Contributors
Author:
Philip Chetcuti
Author:
Fiona Copeland
Author:
Claire Hogg
Author:
Tom Kenny
Author:
Eduardo Moya
Author:
Christopher O'Callaghan
Author:
Woolf T Walker
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