{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,29]],"date-time":"2026-09-29T00:44:42Z","timestamp":1790642682363,"version":"4.1.0"},"reference-count":42,"publisher":"Wiley","issue":"12","license":[{"start":{"date-parts":[[2019,9,1]],"date-time":"2019-09-01T00:00:00Z","timestamp":1567296000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"DOI":"10.13039\/501100005188","name":"AAIR Charity","doi-asserted-by":"publisher","award":["Reg. No. 1129698"],"award-info":[{"award-number":["Reg. 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Total of 13 children, 13 parents, and 17 adolescents repeated QOL\u2010PCD\u00a010 to 14 days later to assess test\u2010retest reliability. Multitrait analysis evaluated how the items loaded to hypothesized scales: physical, emotional &amp; social functioning, treatment burden, role, vitality, upper and lower respiratory symptoms, and ears and hearing symptoms. Examination of item\u2010to\u2010total correlations led to removal of three, five, and six items, respectively in the prototype child, adolescent and parent\u2010proxy versions; the validated measures now comprise between 34 and 38 items.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>The QOL\u2010PCD scales had good internal consistency; Cronbach's \u03b1 for QOL\u2010PCD parent\u2010proxy ranged 0.62 to 0.86. Test\u2010retest reliability demonstrated stability across all scales; for example QOL\u2010PCD adolescent intraclass correlation coefficients ranged 0.71 to 0.89. Significant relationships were found between QOL\u2010PCD scales and similar constructs on generic questionnaires, for example, QOL\u2010PCD adolescent lower respiratory symptoms and the CAT score (<jats:italic>r<\/jats:italic>\u2009=\u2009.64, <jats:italic>P<\/jats:italic>\u2009&lt;\u2009.01); weaker correlations were found between different constructs.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>Age\u2010specific QOL\u2010PCD demonstrated good internal consistency, test\u2010retest reliability, and validity. QOL\u2010PCD offers promising outcome measures for multicenter clinical trials, as well as monitoring symptoms, functioning, and QOL during routine care.<\/jats:p><\/jats:sec>","DOI":"10.1002\/ppul.24507","type":"journal-article","created":{"date-parts":[[2019,9,2]],"date-time":"2019-09-02T04:27:55Z","timestamp":1567398475000},"page":"2011-2020","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":36,"title":["Validation of pediatric health\u2010related quality of life instruments for primary ciliary dyskinesia (QOL\u2010PCD)"],"prefix":"10.1002","volume":"54","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-0748-6141","authenticated-orcid":false,"given":"Laura","family":"Behan","sequence":"first","affiliation":[{"name":"Primary Ciliary Dyskinesia Centre University Hospital Southampton NHS Foundation Trust, University of Southampton  Southampton UK"},{"name":"NIHR Southampton Respiratory Biomedical Research Unit University 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