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A quality-of-life measure for adults with primary ciliary dyskinesia: QOL-PCD

A quality-of-life measure for adults with primary ciliary dyskinesia: QOL-PCD
A quality-of-life measure for adults with primary ciliary dyskinesia: QOL-PCD
Primary ciliary dyskinesia (PCD) is characterised by chronic suppurative lung disease, rhino-sinusitis, hearing impairment and sub-fertility. We have developed the first multidimensional measure to assess health-related quality of life (HRQoL) in adults with PCD (QOL-PCD). Following a literature review and expert panel meeting, open-ended interviews with patients investigated the impact of PCD on HRQoL in the UK and North America (n=21). Transcripts were content analysed to derive saturation matrices. Items were rated for relevance by patients (n=49). Saturation matrices, relevance scores, literature review, evaluation of existing measures, and expert opinion contributed to development of a preliminary questionnaire. The questionnaire was refined following cognitive interviews (n=18). Open-ended interviews identified a spectrum of issues unique to adults with PCD. Saturation matrices confirmed comprehensive coverage of content. QOL-PCD includes 48 items covering the following seven domains: Physical Functioning, Emotional Functioning, Treatment Burden, Respiratory and Sinus Symptoms, Ears and Hearing, Social Functioning, and Vitality and Health Perceptions. Cognitive testing confirmed that content was comprehensive and the items were well-understood by respondents. Content validity and cognitive testing supported the items and structure. QOL-PCD has been translated into other languages and is awaiting psychometric testing.
0903-1936
Lucas, Jane S.
5cb3546c-87b2-4e59-af48-402076e25313
Behan, Laura
cf1a7b5e-64c5-4b02-8db2-7ad96781d40d
Dunn Galvin, Audrey
df33ae04-bb19-4024-83ed-25c3e3a676e0
Alpern, Adrianne
d0bc3a65-7fc6-417f-bc63-413757f83fbe
Morris, Anjana M.
71b655cf-5831-46a6-94ac-58b5a67f3f5a
Carroll, Mary P.
f7e407a5-f7fa-4efd-a7f1-8e6140b86f50
Knowles, Michael R.
164069d2-1ec2-41ce-8bf8-b48462a5a206
Leigh, Margaret W.
70d7e4e3-28ad-4bd2-a5c1-5daba603e1cb
Quittner, Alexandra L.
c0f8318e-574d-4766-8154-6f055eba45ea
Lucas, Jane S.
5cb3546c-87b2-4e59-af48-402076e25313
Behan, Laura
cf1a7b5e-64c5-4b02-8db2-7ad96781d40d
Dunn Galvin, Audrey
df33ae04-bb19-4024-83ed-25c3e3a676e0
Alpern, Adrianne
d0bc3a65-7fc6-417f-bc63-413757f83fbe
Morris, Anjana M.
71b655cf-5831-46a6-94ac-58b5a67f3f5a
Carroll, Mary P.
f7e407a5-f7fa-4efd-a7f1-8e6140b86f50
Knowles, Michael R.
164069d2-1ec2-41ce-8bf8-b48462a5a206
Leigh, Margaret W.
70d7e4e3-28ad-4bd2-a5c1-5daba603e1cb
Quittner, Alexandra L.
c0f8318e-574d-4766-8154-6f055eba45ea

Lucas, Jane S., Behan, Laura, Dunn Galvin, Audrey, Alpern, Adrianne, Morris, Anjana M., Carroll, Mary P., Knowles, Michael R., Leigh, Margaret W. and Quittner, Alexandra L. (2015) A quality-of-life measure for adults with primary ciliary dyskinesia: QOL-PCD. European Respiratory Journal. (doi:10.1183/09031936.00216214). (PMID:25976687)

Record type: Article

Abstract

Primary ciliary dyskinesia (PCD) is characterised by chronic suppurative lung disease, rhino-sinusitis, hearing impairment and sub-fertility. We have developed the first multidimensional measure to assess health-related quality of life (HRQoL) in adults with PCD (QOL-PCD). Following a literature review and expert panel meeting, open-ended interviews with patients investigated the impact of PCD on HRQoL in the UK and North America (n=21). Transcripts were content analysed to derive saturation matrices. Items were rated for relevance by patients (n=49). Saturation matrices, relevance scores, literature review, evaluation of existing measures, and expert opinion contributed to development of a preliminary questionnaire. The questionnaire was refined following cognitive interviews (n=18). Open-ended interviews identified a spectrum of issues unique to adults with PCD. Saturation matrices confirmed comprehensive coverage of content. QOL-PCD includes 48 items covering the following seven domains: Physical Functioning, Emotional Functioning, Treatment Burden, Respiratory and Sinus Symptoms, Ears and Hearing, Social Functioning, and Vitality and Health Perceptions. Cognitive testing confirmed that content was comprehensive and the items were well-understood by respondents. Content validity and cognitive testing supported the items and structure. QOL-PCD has been translated into other languages and is awaiting psychometric testing.

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Accepted/In Press date: 7 March 2015
Published date: 14 May 2015
Organisations: Clinical & Experimental Sciences

Identifiers

Local EPrints ID: 377890
URI: https://eprints.soton.ac.uk/id/eprint/377890
ISSN: 0903-1936
PURE UUID: aa15084f-c4a9-46a3-8202-0ad3191d76cc

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Date deposited: 22 Jun 2015 13:49
Last modified: 17 Jul 2017 20:56

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Contributors

Author: Jane S. Lucas
Author: Laura Behan
Author: Audrey Dunn Galvin
Author: Adrianne Alpern
Author: Anjana M. Morris
Author: Mary P. Carroll
Author: Michael R. Knowles
Author: Margaret W. Leigh
Author: Alexandra L. Quittner

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