Life With Cystic Fibrosis: The Socioeconomic Impact on Patients and Their Caregivers
Status Publisher Language English Country United States Media print-electronic
Document type Journal Article
PubMed
39933437
DOI
10.1016/j.vhri.2025.101085
PII: S2212-1099(25)00010-X
Knihovny.cz E-resources
- Keywords
- caregiver burden, cystic fibrosis, productivity costs, quality of life, societal burden,
- Publication type
- Journal Article MeSH
OBJECTIVES: This study aimed to provide the first evidence of the socioeconomic burden of cystic fibrosis (CF) in Czechia. METHODS: In a cross-sectional questionnaire-based primary data collection conducted from 2020 to 2021 among Czech patients with CF, we collected demographic, clinical, and healthcare resource use data, out-of-pocket and social transfer costs, and questionnaires: Cystic Fibrosis Questionnaire-Revised, Work Productivity and Activity Impairment, EQ-5D, and Zarit Burden Interview. Productivity loss/costs were assessed using the human capital approach with patient patient-assumed life expectancy of 45 years and caregiver retirement age of 64 years and discounted by 3%. RESULTS: A total of 257 patients completed the questionnaires (37% of the Czech CF population). The average age was 17 years; most were females (59%), and the average forced expiratory volume in 1 second was 81.4% (SD 25.4%). A total of 107 patients had caregivers with an average age of 39 years and a significant caregiver time burden (extra 4.6 hours/day). The average Zarit Burden Interview score (25.4) was comparable with advanced cancer, dementia, or Duchenne muscular dystrophy. The proportion of unemployed caregivers was 10× higher than the general population (31% vs 3.2%). Total out-of-pocket family costs related to CF were €278/month, mainly for medicines (€105), foods (€73), and transport (€59); 25% received a disability pension and 18% other social security benefits. The work impairment of employed patients and caregivers was 25% and 15%, respectively, mostly due to presenteeism. Total lifetime productivity costs extrapolated to all Czech patients with CF (n = 687) and their caregivers were €155 181 286 (€225 883/person). CONCLUSIONS: The societal burden imposed on Czech patients with CF and their caregivers is significant. Caregivers seem to be affected by higher disease activity more than patients.
Czech Cystic Fibrosis Association Prague Czech Republic
Department of Medical Informatics 1st Faculty of Medicine Charles University Prague Czech Republic
Institute of Health Economics and Technology Assessment Prague Czech Republic
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