Life With Cystic Fibrosis: The Socioeconomic Impact on Patients and Their Caregivers
The result's identifiers
Result code in IS VaVaI
<a href="https://www.isvavai.cz/riv?ss=detail&h=RIV%2F00216208%3A11110%2F25%3A10497230" target="_blank" >RIV/00216208:11110/25:10497230 - isvavai.cz</a>
Alternative codes found
RIV/00216224:14110/25:00142678
Result on the web
<a href="https://verso.is.cuni.cz/pub/verso.fpl?fname=obd_publikace_handle&handle=KYGB5qklGI" target="_blank" >https://verso.is.cuni.cz/pub/verso.fpl?fname=obd_publikace_handle&handle=KYGB5qklGI</a>
DOI - Digital Object Identifier
<a href="http://dx.doi.org/10.1016/j.vhri.2025.101085" target="_blank" >10.1016/j.vhri.2025.101085</a>
Alternative languages
Result language
angličtina
Original language name
Life With Cystic Fibrosis: The Socioeconomic Impact on Patients and Their Caregivers
Original language description
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 10x higher than the general population (31% vs 3.2%). Total out-of-pocket family costs related to CF were EUR278/month, mainly for medicines (EUR105), foods (EUR73), and transport (EUR59); 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 EUR155 181 286 (EUR225 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 name
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Czech description
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Classification
Type
J<sub>imp</sub> - Article in a specialist periodical, which is included in the Web of Science database
CEP classification
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OECD FORD branch
30304 - Public and environmental health
Result continuities
Project
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Continuities
V - Vyzkumna aktivita podporovana z jinych verejnych zdroju
Others
Publication year
2025
Confidentiality
S - Úplné a pravdivé údaje o projektu nepodléhají ochraně podle zvláštních právních předpisů
Data specific for result type
Name of the periodical
Value in Health Regional Issues
ISSN
2212-1099
e-ISSN
2212-1102
Volume of the periodical
47
Issue of the periodical within the volume
May
Country of publishing house
US - UNITED STATES
Number of pages
9
Pages from-to
101085
UT code for WoS article
001426051300001
EID of the result in the Scopus database
2-s2.0-85217110082