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Overcoming challenges in the management of primary ciliary dyskinesia: the UK model

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
1526-0550
Lucas, Jane S
5cb3546c-87b2-4e59-af48-402076e25313
Chetcuti, Philip
c2f54e84-ed63-43fa-a0e8-2334a4680d13
Copeland, Fiona
64d779cf-20e4-461d-abae-0906e105a8bf
Hogg, Claire
78881fd2-dbe9-4c28-b050-3387c163df1e
Kenny, Tom
4c769aab-f9a4-41b9-bbac-086f9f7b614c
Moya, Eduardo
975edff7-ef6f-4de2-a6e5-b72ad321a02b
O'Callaghan, Christopher
b985540d-eac0-4308-95d3-ffe156867d45
Walker, Woolf T
b9981f69-8c4e-441d-93d7-d45e65341576
Lucas, Jane S
5cb3546c-87b2-4e59-af48-402076e25313
Chetcuti, Philip
c2f54e84-ed63-43fa-a0e8-2334a4680d13
Copeland, Fiona
64d779cf-20e4-461d-abae-0906e105a8bf
Hogg, Claire
78881fd2-dbe9-4c28-b050-3387c163df1e
Kenny, Tom
4c769aab-f9a4-41b9-bbac-086f9f7b614c
Moya, Eduardo
975edff7-ef6f-4de2-a6e5-b72ad321a02b
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)

Record type: Article

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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More information

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
ORCID for Jane S Lucas: ORCID iD orcid.org/0000-0001-8701-9975

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Date deposited: 17 Jun 2013 10:53
Last modified: 15 Mar 2024 03:12

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Contributors

Author: Jane S Lucas ORCID iD
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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