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)

BACKGROUND: As 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. METHODS: Parents 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. RESULTS: 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 α was 0.87, indicating very good internal consistency. CONCLUSION: This 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.