{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,26]],"date-time":"2026-06-26T11:49:21Z","timestamp":1782474561732,"version":"3.54.5"},"reference-count":26,"publisher":"Wiley","issue":"6","license":[{"start":{"date-parts":[[2026,6,12]],"date-time":"2026-06-12T00:00:00Z","timestamp":1781222400000},"content-version":"vor","delay-in-days":11,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"},{"start":{"date-parts":[[2026,6,1]],"date-time":"2026-06-01T00:00:00Z","timestamp":1780272000000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"funder":[{"DOI":"10.13039\/100010414","name":"Health Research Board","doi-asserted-by":"publisher","award":["ILP\u2010HSR\u20102019\u2010005"],"award-info":[{"award-number":["ILP\u2010HSR\u20102019\u2010005"]}],"id":[{"id":"10.13039\/100010414","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Pediatric Pulmonology"],"published-print":{"date-parts":[[2026,6]]},"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>As a part of the Irish Comparative Outcome national cohort study of childhood CF, this cross\u2010sectional study investigated challenges faced by parents of children with CF (CWCF) in the Republic of Ireland using a newly validated modified tool.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>\n                      Parents completed the modified \u201cChallenge of Living with Cystic Fibrosis\u2010Short Form\u201d (CLCF\u2010SF), developed to determine caregiver burden for parents of CWCF, with limited items (\n                      <jats:italic>N<\/jats:italic>\n                      \u2009=\u200915) to complete. Linear regression examined associations between CLCF\u2010SF scores and demographic and clinical factors.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>263 of 357 (73.6%) responded. Parents reported marginal to great difficulty in balancing daily lives and CF care (31%), managing extra expenses (46.8%), and establishing care routines (76.5%). Parents felt supported by medical teams. Parents of younger children reported more difficulties juggling CF demands with family needs (39.3% vs 25.0%), a more stressful family lifestyle (51.4% vs 39.1%). A greater proportion of parents of older CWCF (48.1% vs 28%) and of CWCF on CFTR modulator therapy (45% vs 27%) reported moodiness. Cronbach's \u03b1 was 0.87, indicating very good internal consistency.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>This was the first use of the modified CLCF\u2010SF in a population setting. High response rates indicate ease of completion. This study provides an assessment of internal consistency, usability, and performance of the modified version of the new tool; the need for age\u2010adequate financial and psychological support is highlighted.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1002\/ppul.71694","type":"journal-article","created":{"date-parts":[[2026,6,12]],"date-time":"2026-06-12T11:30:53Z","timestamp":1781263853000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Performance Evaluation of a Novel Cystic Fibrosis Caregiver Burden Measure Demonstrates Significant Challenges for Parents of Children With CF During the Early Years: The Irish Comparative Outcomes Study (ICOS)"],"prefix":"10.1002","volume":"61","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-2653-783X","authenticated-orcid":false,"given":"Rini","family":"Bhatnagar","sequence":"first","affiliation":[{"name":"School of Public Health, Physiotherapy and Sports Science University College Dublin Dublin Ireland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nancy","family":"Bhardwaj","sequence":"additional","affiliation":[{"name":"School of Public Health, Physiotherapy and Sports Science University College Dublin Dublin Ireland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gwinyai","family":"Masukume","sequence":"additional","affiliation":[{"name":"School of Public Health, Physiotherapy and Sports Science University College Dublin Dublin Ireland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ricardo","family":"Segurado","sequence":"additional","affiliation":[{"name":"School of Public Health, Physiotherapy and Sports Science University College Dublin Dublin Ireland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Barry","family":"Linnane","sequence":"additional","affiliation":[{"name":"Limerick University Hospital and Graduate Entry Medical School and Centre for Interventions in Infection, Inflammation; Immunity, University of Limerick Limerick Ireland"},{"name":"National Children's Research Centre Dublin Crumlin Ireland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mary","family":"Herzig","sequence":"additional","affiliation":[{"name":"University Hospital Galway Galway Ireland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Muireann Ni","family":"Chronin","sequence":"additional","affiliation":[{"name":"Cork University Hospital Cork Ireland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"David","family":"Mullane","sequence":"additional","affiliation":[{"name":"Cork University Hospital Cork Ireland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Des","family":"W. 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