ArticlePediatric pulmonology2026
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).
Article in Pediatric pulmonology, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
backgroundAs a part of the Irish Comparative Outcome national cohort study of childhood CF, this cross-sectional study investigated challenges faced by parents of children with CF (CWCF) in the Republic of Ireland using a newly validated modified tool.
methodsParents completed the modified "Challenge of Living with Cystic Fibrosis-Short Form" (CLCF-SF), developed to determine caregiver burden for parents of CWCF, with limited items (N = 15) to complete. Linear regression examined associations between CLCF-SF scores and demographic and clinical factors.
results263 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 α was 0.87, indicating very good internal consistency.
conclusionThis was the first use of the modified CLCF-SF 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-adequate financial and psychological support is highlighted.
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