{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,17]],"date-time":"2026-08-17T13:24:35Z","timestamp":1786973075401,"version":"build-2736575974"},"reference-count":44,"publisher":"MDPI AG","issue":"16","license":[{"start":{"date-parts":[[2026,8,16]],"date-time":"2026-08-16T00:00:00Z","timestamp":1786838400000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"name":"University of Oradea"},{"id":[{"id":"https:\/\/ror.org\/00wzhv093","id-type":"ROR","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["J. Clin. Med.","JCM"],"abstract":"<jats:p>Background\/Objectives: Highly effective cystic fibrosis transmembrane conductance regulator (CFTR) modulator therapy has changed cystic fibrosis (CF) care, but Romanian patient-reported health-related quality of life (HRQoL) data remain limited. This national cross-sectional mixed-methods survey aimed to describe patient- and parent-reported HRQoL in Romanian people with CF (pwCF) aged \u22656 years using age-appropriate Cystic Fibrosis Questionnaire-Revised (CFQ-R) versions, with the respiratory domain as the primary outcome. Methods: The online survey was conducted between February and April 2026. Respondents provided demographic and clinical data, including genotype\/F508del status, CFTR modulator status, percent predicted forced expiratory volume in 1 s (ppFEV1) category, weight, height, and IV antibiotic-treated pulmonary exacerbations in the previous year. CFQ-R scores were summarized descriptively, and exploratory unadjusted associations were assessed using Mann\u2013Whitney U tests and Spearman correlations. Open-ended responses were analyzed descriptively. Results: Of 67 responses, 61 were included: 43 participants aged 6\u201313 years and 18 aged \u226514 years. Most respondents were currently receiving CFTR modulators (52\/61, 85.2%), predominantly elexacaftor\/tezacaftor\/ivacaftor. Mean CFQ-R Respiratory scores were 74.5 \u00b1 23.1 in parent-proxy questionnaires for children aged 6\u201313 years, 83.3 \u00b1 11.8 in self-reported questionnaires for children aged 12\u201313 years, and 69.8 \u00b1 27.4 among respondents aged \u226514 years. Respiratory scores were higher among currently treated respondents and those with at least one F508del variant, and lower among those reporting IV antibiotic-treated exacerbations. Treatment burden remained among the lower-scoring domains. Qualitative responses described perceived respiratory, nutritional, and functional improvements, alongside residual treatment burden, psychosocial challenges, and access-related expectations. Conclusions: This national Romanian mixed-methods survey provides descriptive, exploratory CFQ-R-based HRQoL data in the CFTR modulator era. The findings suggest more favorable respiratory HRQoL among currently treated respondents, while supporting continued multidimensional patient-reported outcome monitoring in Romanian CF care.<\/jats:p>","DOI":"10.3390\/jcm15166328","type":"journal-article","created":{"date-parts":[[2026,8,17]],"date-time":"2026-08-17T12:01:26Z","timestamp":1786968086000},"page":"6328","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Patient-Reported Health-Related Quality of Life in Romanian Patients with Cystic Fibrosis in the Era of Highly Effective CFTR Modulator Therapy: A National Cross-Sectional Mixed-Methods Survey"],"prefix":"10.3390","volume":"15","author":[{"given":"Cristian Phillip","family":"Marin\u0103u","sequence":"first","affiliation":[{"name":"Department of Medical Disciplines, Faculty of Medicine and Pharmacy, University of Oradea, 410073 Oradea, Romania"},{"name":"Pediatrics Department, Bihor County Clinical Emergency Hospital, 410167 Oradea, Romania"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6456-5770","authenticated-orcid":false,"given":"Cristian","family":"Sava","sequence":"additional","affiliation":[{"name":"Department of Medical Disciplines, Faculty of Medicine and Pharmacy, University of Oradea, 410073 Oradea, Romania"},{"name":"Pediatrics Department, Bihor County Clinical Emergency Hospital, 410167 Oradea, Romania"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2463-8100","authenticated-orcid":false,"given":"Alin","family":"Iuhas","sequence":"additional","affiliation":[{"name":"Department of Medical Disciplines, Faculty of Medicine and Pharmacy, University of Oradea, 410073 Oradea, Romania"},{"name":"Pediatrics Department, Bihor County Clinical Emergency Hospital, 410167 Oradea, Romania"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2879-8080","authenticated-orcid":false,"given":"Ioana Mihaiela","family":"Ciuc\u0103","sequence":"additional","affiliation":[{"name":"Pediatric Department, University of Medicine and Pharmacy \u201cVictor Babes\u201d, 300041 Timi\u0219oara, Romania"},{"name":"National Cystic Fibrosis Centre and Pediatric Pulmonology Ward, \u201cPius Br\u00eenzeu\u201d County Emergency Clinical Hospital, 300226 Timi\u0219oara, Romania"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Liviu Lauren\u021biu","family":"Pop","sequence":"additional","affiliation":[{"name":"Pediatric Department, University of Medicine and Pharmacy \u201cVictor Babes\u201d, 300041 Timi\u0219oara, Romania"},{"name":"National Cystic Fibrosis Centre and Pediatric Pulmonology Ward, \u201cPius Br\u00eenzeu\u201d County Emergency Clinical Hospital, 300226 Timi\u0219oara, Romania"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6194-6797","authenticated-orcid":false,"given":"Mihai","family":"Craiu","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, Carol Davila University of Medicine and Pharmacy, 050474 Bucharest, Romania"},{"name":"National Institute for Mother and Child Health, Alessandrescu-Rusescu, 020395 Bucharest, Romania"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Zsolt","family":"Futaki","sequence":"additional","affiliation":[{"name":"Pediatrics Department, Bihor County Clinical Emergency Hospital, 410167 Oradea, Romania"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ariana","family":"Szilagyi","sequence":"additional","affiliation":[{"name":"Department of Medical Disciplines, Faculty of Medicine and Pharmacy, University of Oradea, 410073 Oradea, Romania"},{"name":"Pediatrics Department, Bihor County Clinical Emergency Hospital, 410167 Oradea, Romania"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Alexandru","family":"Jurca","sequence":"additional","affiliation":[{"name":"Department of Preclinical Disciplines, Faculty of Medicine and Pharmacy, University of Oradea, 410073 Oradea, Romania"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Claudia Maria","family":"Jurca","sequence":"additional","affiliation":[{"name":"Department of Preclinical Disciplines, Faculty of Medicine and Pharmacy, University of Oradea, 410073 Oradea, Romania"},{"name":"Regional Center of Medical Genetics Bihor, Bihor County Clinical Emergency Hospital (Part of ERN ITHACA), 410053 Oradea, Romania"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1968","published-online":{"date-parts":[[2026,8,16]]},"reference":[{"key":"ref_1","doi-asserted-by":"crossref","first-page":"1622","DOI":"10.1002\/ppul.26954","article-title":"International Disparities in Diagnosis and Treatment Access for Cystic Fibrosis","volume":"59","author":"Guo","year":"2024","journal-title":"Pediatr. 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