{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,29]],"date-time":"2026-10-29T17:50:49Z","timestamp":1793296249151,"version":"4.5.0"},"reference-count":27,"publisher":"European Respiratory Society (ERS)","issue":"2","funder":[{"name":"NHS England"},{"DOI":"10.13039\/100005564","name":"Gilead Sciences","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100005564","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000002","name":"National Institutes of Health","doi-asserted-by":"publisher","award":["U54HL096458"],"award-info":[{"award-number":["U54HL096458"]}],"id":[{"id":"10.13039\/100000002","id-type":"DOI","asserted-by":"publisher"}]},{"name":"European Union\u2019s Seventh Framework Programme","award":["EC-GA No. 305404"],"award-info":[{"award-number":["EC-GA No. 305404"]}]}],"content-domain":{"domain":["publications.ersnet.org"],"crossmark-restriction":true},"short-container-title":["Eur Respir J"],"accepted":{"date-parts":[[2015,3,7]]},"published-print":{"date-parts":[[2015,8]]},"abstract":"<jats:p>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\u2013PCD).<\/jats:p>\n                  <jats:p>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).<\/jats:p>\n                  <jats:p>Open-ended interviews identified a spectrum of issues unique to adults with PCD. Saturation matrices confirmed comprehensive coverage of content. QOL\u2013PCD 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.<\/jats:p>\n                  <jats:p>Content validity and cognitive testing supported the items and structure. QOL\u2013PCD has been translated into other languages and is awaiting psychometric testing.<\/jats:p>","DOI":"10.1183\/09031936.00216214","type":"journal-article","created":{"date-parts":[[2015,5,14]],"date-time":"2015-05-14T22:02:15Z","timestamp":1431640935000},"page":"375-383","update-policy":"https:\/\/doi.org\/10.1183\/ers-crossmark-policy","source":"Crossref","is-referenced-by-count":78,"title":["A quality-of-life measure for adults with primary ciliary dyskinesia: QOL\u2013PCD"],"prefix":"10.1183","volume":"46","author":[{"given":"Jane S.","family":"Lucas","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Laura","family":"Behan","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Audrey","family":"Dunn Galvin","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Adrianne","family":"Alpern","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anjana M.","family":"Morris","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mary P.","family":"Carroll","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Michael R.","family":"Knowles","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Margaret W.","family":"Leigh","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Alexandra L.","family":"Quittner","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"81","published-online":{"date-parts":[[2015,5,14]]},"reference":[{"key":"2024102023323974000_46.2.375.1","doi-asserted-by":"publisher","DOI":"10.1136\/archdischild-2013-304831"},{"key":"2024102023323974000_46.2.375.2","doi-asserted-by":"crossref","unstructured":"Lucas JS , Walker WT , Kuehni CE , et al. Primary ciliary dyskinesia. In: Cordier J-F , ed. Orphan Lung Diseases (ERS Monograph). 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Reflection paper on the regulatory guidance for the use of health-related quality of life (HRQL) measures in the evaluation of medicinal products. 2005. 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