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

Lucas JS, Behan L, Dunn Galvin A, Alpern A, Morris AM, Carroll MP, Knowles MR, Leigh MW, Quittner AL - Eur. Respir. J. (2015)

Bottom Line: Saturation matrices confirmed comprehensive coverage of content.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.

View Article: PubMed Central - PubMed

Affiliation: Primary Ciliary Dyskinesia Centre, University Hospital Southampton NHS Foundation Trust, Southampton, UK NIHR Southampton Respiratory Biomedical Research Unit, University of Southampton and University Hospital Southampton NHS Foundation Trust, Southampton, UK Academic Unit of Clinical and Experimental Sciences Faculty of Medicine, University of Southampton, Southampton, UK Both authors contributed equally jlucas1@soton.ac.uk.

No MeSH data available.


Related in: MedlinePlus

Saturation grids for UK and US participants: respiratory symptoms, sinus symptoms, and ear and hearing symptoms. Vertical lines indicate saturation was reached. All items above the horizontal lines were retained for the final questionnaire. Shaded cells refer to the first time the item was mentioned. #: participants did not indicate adverse effects of difficulty smelling; therefore it was not included in the final questionnaire.
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Figure 1: Saturation grids for UK and US participants: respiratory symptoms, sinus symptoms, and ear and hearing symptoms. Vertical lines indicate saturation was reached. All items above the horizontal lines were retained for the final questionnaire. Shaded cells refer to the first time the item was mentioned. #: participants did not indicate adverse effects of difficulty smelling; therefore it was not included in the final questionnaire.

Mentions: Content analysis of the transcripts yielded the most important items for each of the 10 domains based on the frequency with which they were mentioned across adults. Saturation of content, across domains, was confirmed when no new themes emerged (figure 1). Our results indicated that this was achieved by the 5–7th interview, depending on the specific content area. We also harmonised the content across UK and North America to identify the most important topics. The items that were considered most important and relevant by the participants who performed the open-ended interviews were also scored as highly relevant by the 49 adult members of the PCD UK support group who completed the survey. Thus, content analysis of the interviews concurred with results of the survey (supplement table S).FIGURE 1


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

Lucas JS, Behan L, Dunn Galvin A, Alpern A, Morris AM, Carroll MP, Knowles MR, Leigh MW, Quittner AL - Eur. Respir. J. (2015)

Saturation grids for UK and US participants: respiratory symptoms, sinus symptoms, and ear and hearing symptoms. Vertical lines indicate saturation was reached. All items above the horizontal lines were retained for the final questionnaire. Shaded cells refer to the first time the item was mentioned. #: participants did not indicate adverse effects of difficulty smelling; therefore it was not included in the final questionnaire.
© Copyright Policy - open-access
Related In: Results  -  Collection

License
Show All Figures
getmorefigures.php?uid=PMC4522020&req=5

Figure 1: Saturation grids for UK and US participants: respiratory symptoms, sinus symptoms, and ear and hearing symptoms. Vertical lines indicate saturation was reached. All items above the horizontal lines were retained for the final questionnaire. Shaded cells refer to the first time the item was mentioned. #: participants did not indicate adverse effects of difficulty smelling; therefore it was not included in the final questionnaire.
Mentions: Content analysis of the transcripts yielded the most important items for each of the 10 domains based on the frequency with which they were mentioned across adults. Saturation of content, across domains, was confirmed when no new themes emerged (figure 1). Our results indicated that this was achieved by the 5–7th interview, depending on the specific content area. We also harmonised the content across UK and North America to identify the most important topics. The items that were considered most important and relevant by the participants who performed the open-ended interviews were also scored as highly relevant by the 49 adult members of the PCD UK support group who completed the survey. Thus, content analysis of the interviews concurred with results of the survey (supplement table S).FIGURE 1

Bottom Line: Saturation matrices confirmed comprehensive coverage of content.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.

View Article: PubMed Central - PubMed

Affiliation: Primary Ciliary Dyskinesia Centre, University Hospital Southampton NHS Foundation Trust, Southampton, UK NIHR Southampton Respiratory Biomedical Research Unit, University of Southampton and University Hospital Southampton NHS Foundation Trust, Southampton, UK Academic Unit of Clinical and Experimental Sciences Faculty of Medicine, University of Southampton, Southampton, UK Both authors contributed equally jlucas1@soton.ac.uk.

No MeSH data available.


Related in: MedlinePlus