{"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":1790642682209,"version":"4.1.0"},"reference-count":16,"publisher":"MDPI AG","issue":"4","license":[{"start":{"date-parts":[[2024,6,24]],"date-time":"2024-06-24T00:00:00Z","timestamp":1719187200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["ARM"],"abstract":"<jats:p>In recent years, questionnaires were published in English to assess the quality of life of patients with PCD (Primary Ciliary Diskinesia) for adults, adolescents aged 13\u201317 years, and children aged 6\u201312 years and their caregivers. This study aimed to prepare Polish versions of the questionnaires and validate them in specific age groups with the participation of Polish patients with PCD. The individual questionnaires were translated and discussed with the involvement of the creator of the original questionnaire in English. Patients completed the questionnaires according to their affiliation with one of the groups. Validation was based on internal consistency analysis (Cronbach\u2019s alpha coefficient and split-half reliability) and test\u2013retest reliability (intraclass correlation coefficient\u2014ICC). The internal consistency of all questionnaires was from moderate to very good (Cronbach\u2019s alpha 0.67\u20130.91, split-half reliability 0.53\u20130.95). The consistency of the measurements showed excellent repeatability (ICC 0.67\u20130.91). The surveyed Polish PCD patients rated their quality of life quite well (63\u201377%). QOL questionnaires for patients with PCD can be used routinely during each medical check-up as a simple tool to provide the doctor with an indication of the effectiveness of treatment and the impact of the disease on the patient\u2019s quality of life.<\/jats:p>","DOI":"10.3390\/arm92040025","type":"journal-article","created":{"date-parts":[[2024,6,24]],"date-time":"2024-06-24T10:41:12Z","timestamp":1719225672000},"page":"254-262","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":3,"title":["Validation of Polish-Language Questionnaires for Assessing the Quality of Life of Patients with Primary Ciliary Dyskinesia (PCD-QOL)"],"prefix":"10.3390","volume":"92","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-6752-9767","authenticated-orcid":false,"given":"Magdalena Anita","family":"Roszak","sequence":"first","affiliation":[{"name":"Department of Pulmonology, Pediatric Allergy and Clinical Immunology, Poznan University of Medical Sciences, ul. Szpitalna 27\/33, 60-567 Poznan, Poland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anna","family":"Br\u0119borowicz","sequence":"additional","affiliation":[{"name":"Department of Pulmonology, Pediatric Allergy and Clinical Immunology, Poznan University of Medical Sciences, ul. Szpitalna 27\/33, 60-567 Poznan, Poland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3379-9106","authenticated-orcid":false,"given":"Aleksandra","family":"Szczepankiewicz","sequence":"additional","affiliation":[{"name":"Laboratory of Molecular and Cell Biology, Poznan University of Medical Sciences, ul. Szpitalna 27\/33, 60-576 Poznan, Poland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2792-3764","authenticated-orcid":false,"given":"Marcin","family":"Miko\u015b","sequence":"additional","affiliation":[{"name":"Department of Pulmonology, Pediatric Allergy and Clinical Immunology, Poznan University of Medical Sciences, ul. Szpitalna 27\/33, 60-567 Poznan, Poland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6945-1059","authenticated-orcid":false,"given":"Zuzanna","family":"Bukowy-Biery\u0142\u0142o","sequence":"additional","affiliation":[{"name":"Department of Molecular and Clinical Genetics, Institute of Human Genetics, Polish Academy of Sciences, ul. Strzeszynska 32, 60-479 Poznan, Poland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1811-2583","authenticated-orcid":false,"given":"Barbara","family":"Wi\u0119ckowska","sequence":"additional","affiliation":[{"name":"Department of Computer Sciences and Statistics, Poznan University of Medical Sciences, ul. Rokietnicka 7, 60-806 Poznan, Poland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0748-6141","authenticated-orcid":false,"given":"Laura","family":"Behan","sequence":"additional","affiliation":[{"name":"Primary Ciliary Dyskinesia Centre, NIHR Biomedical Research Centre, University Hospital Southampton NHS Foundation Trust, Tremona Rd, Southampton SO16 6YD, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6450-0835","authenticated-orcid":false,"given":"Hanna","family":"Dme\u0144ska","sequence":"additional","affiliation":[{"name":"Clinic of Pulmonary Diseases, The Children\u2019s Memorial Health Institute, Aleja Dzieci Polskich 20, 04-730 Warsaw, Poland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Joanna","family":"Go\u017adzik-Spychalska","sequence":"additional","affiliation":[{"name":"Department of Pulmonology, Allergology and Respiratory Oncology, Poznan University of Medical Sciences, ul. Szamarzewskiego 84, 60-569 Poznan, Poland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Agata","family":"Nowicka","sequence":"additional","affiliation":[{"name":"Department of Pulmonology, Allergology and Respiratory Oncology, Poznan University of Medical Sciences, ul. Szamarzewskiego 84, 60-569 Poznan, Poland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ewa","family":"Sapiejka","sequence":"additional","affiliation":[{"name":"Department of Pediatrics and Cystic Fibrosis, Polanki Children\u2019s Hospital, ul. Polanki 119, 80-308 Gdansk, Poland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Paulina","family":"Famulska","sequence":"additional","affiliation":[{"name":"Department of Pediatrics and Cystic Fibrosis, Polanki Children\u2019s Hospital, ul. Polanki 119, 80-308 Gdansk, Poland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"El\u017cbieta","family":"G\u0105secka","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, Allergology and Immunology, Polanki Children\u2019s Hospital, ul. Polanki 119, 80-308 Gdansk, Poland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Andrzej","family":"Pogorzelski","sequence":"additional","affiliation":[{"name":"Department of Pneumology and Cystic Fibrosis, Institute of Tuberculosis and Lung Diseases, ul. Rudnika 3B, 34-700 Rabka-Zdr\u00f3j, Poland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6724-1499","authenticated-orcid":false,"given":"Irena","family":"Wojsyk-Banaszak","sequence":"additional","affiliation":[{"name":"Department of Pulmonology, Pediatric Allergy and Clinical Immunology, Poznan University of Medical Sciences, ul. Szpitalna 27\/33, 60-567 Poznan, Poland"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1968","published-online":{"date-parts":[[2024,6,24]]},"reference":[{"key":"ref_1","doi-asserted-by":"crossref","first-page":"151","DOI":"10.1007\/s00431-012-1785-6","article-title":"Primary ciliary dyskinesia, an orphan disease","volume":"172","author":"Boon","year":"2013","journal-title":"Eur. J. Pediatr."},{"key":"ref_2","unstructured":"Dobrza\u0144ska, A., Obrycki, \u0141., and Socha, P. (2020). Choroby Rzadkie, Medi Press."},{"key":"ref_3","doi-asserted-by":"crossref","first-page":"312","DOI":"10.1007\/s12519-013-0441-1","article-title":"Psychological, cognitive and maternal stress assessment in children with primary ciliary dyskinesia","volume":"9","author":"Carotenuto","year":"2013","journal-title":"World J. 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