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Life With Cystic Fibrosis: The Socioeconomic Impact on Patients and Their Caregivers

T. Mlcoch, B. Decker, J. Tuzil, B. Turkova, K. Doleckova, B. Koznarova, S. Zabranska, T. Blazkova, H. Dolezal, B. Pilnackova, T. Dolezal

. 2025 ; 47 (-) : 101085. [pub] 20250210

Language English Country United States

Document type Journal Article

Persistent link   https://www.medvik.cz/link/bmc25015958

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.

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$a OBJECTIVES: This study aimed to provide the first evidence of the socioeconomic burden of cystic fibrosis (CF) in Czechia. METHODS: In a cross-sectional questionnaire-based primary data collection conducted from 2020 to 2021 among Czech patients with CF, we collected demographic, clinical, and healthcare resource use data, out-of-pocket and social transfer costs, and questionnaires: Cystic Fibrosis Questionnaire-Revised, Work Productivity and Activity Impairment, EQ-5D, and Zarit Burden Interview. Productivity loss/costs were assessed using the human capital approach with patient patient-assumed life expectancy of 45 years and caregiver retirement age of 64 years and discounted by 3%. RESULTS: A total of 257 patients completed the questionnaires (37% of the Czech CF population). The average age was 17 years; most were females (59%), and the average forced expiratory volume in 1 second was 81.4% (SD 25.4%). A total of 107 patients had caregivers with an average age of 39 years and a significant caregiver time burden (extra 4.6 hours/day). The average Zarit Burden Interview score (25.4) was comparable with advanced cancer, dementia, or Duchenne muscular dystrophy. The proportion of unemployed caregivers was 10× higher than the general population (31% vs 3.2%). Total out-of-pocket family costs related to CF were €278/month, mainly for medicines (€105), foods (€73), and transport (€59); 25% received a disability pension and 18% other social security benefits. The work impairment of employed patients and caregivers was 25% and 15%, respectively, mostly due to presenteeism. Total lifetime productivity costs extrapolated to all Czech patients with CF (n = 687) and their caregivers were €155 181 286 (€225 883/person). CONCLUSIONS: The societal burden imposed on Czech patients with CF and their caregivers is significant. Caregivers seem to be affected by higher disease activity more than patients.
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$a Decker, Barbora $u Institute of Health Economics and Technology Assessment, Prague, Czech Republic; Value Outcomes, Prague, Czech Republic. Electronic address: barbora.decker@valueoutcomes.cz
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$a Tuzil, Jan $u Department of Medical Informatics, First Faculty of Medicine, Charles University, Prague, Czech Republic
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$a Doleckova, Katerina $u Value Outcomes, Prague, Czech Republic
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$a Koznarova, Barbora $u Czech Cystic Fibrosis Association, Prague, Czech Republic
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