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

J 2025

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

MLCOCH, Tomas; Barbora DECKER; Jan TUZIL; Barbora TURKOVA; Katerina DOLECKOVA et al.

Základní údaje

Originální název

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

Autoři

MLCOCH, Tomas; Barbora DECKER; Jan TUZIL; Barbora TURKOVA; Katerina DOLECKOVA; Barbora KOZNAROVA; Simona ZABRANSKA; Tereza BLAZKOVA; Helena DOLEZAL; Barbora PILNACKOVA a Tomáš DOLEŽAL

Vydání

Value in Health Regional Issues, AMSTERDAM, Elsevier, 2025, 2212-1099

Další údaje

Jazyk

angličtina

Typ výsledku

Článek v odborném periodiku

Obor

30230 Other clinical medicine subjects

Stát vydavatele

Nizozemské království

Utajení

není předmětem státního či obchodního tajemství

Odkazy

URL

Impakt faktor

Impact factor: 1.500 v roce 2024

Označené pro přenos do RIV

Ano

Organizační jednotka

Lékařská fakulta

Klíčová slova anglicky

caregiver burden; cystic fibrosis; productivity costs; quality of life; societal burden

Štítky

14110516, rivok

Příznaky

Mezinárodní význam, Recenzováno

Změněno: 25. 11. 2025 10:11, Mgr. Tereza Miškechová

Anotace

V originále

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 103 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.

Citovat

MLCOCH, Tomas; Barbora DECKER; Jan TUZIL; Barbora TURKOVA; Katerina DOLECKOVA; Barbora KOZNAROVA; Simona ZABRANSKA; Tereza BLAZKOVA; Helena DOLEZAL; Barbora PILNACKOVA a Tomáš DOLEŽAL. Life With Cystic Fibrosis: The Socioeconomic Impact on Patients and Their Caregivers. Value in Health Regional Issues. AMSTERDAM: Elsevier, 2025, roč. 47, May 2025, s. 1-9. ISSN 2212-1099. Dostupné z: https://doi.org/10.1016/j.vhri.2025.101085.

@article{2535431,
   author = {Mlcoch, Tomas and Decker, Barbora and Tuzil, Jan and Turkova, Barbora and Doleckova, Katerina and Koznarova, Barbora and Zabranska, Simona and Blazkova, Tereza and Dolezal, Helena and Pilnackova, Barbora and Doležal, Tomáš},
   article_location = {AMSTERDAM},
   article_number = {May 2025},
   doi = {https://doi.org/10.1016/j.vhri.2025.101085},
   keywords = {caregiver burden; cystic fibrosis; productivity costs; quality of life; societal burden},
   language = {eng},
   issn = {2212-1099},
   journal = {Value in Health Regional Issues},
   title = {Life With Cystic Fibrosis: The Socioeconomic Impact on Patients and Their Caregivers},
   url = {https://www.sciencedirect.com/science/article/pii/S221210992500010X?pes=vor&utm_source=clarivate&getft_integrator=clarivate},
   volume = {47},
   year = {2025}
}

TY  - JOUR
ID  - 2535431
AU  - Mlcoch, Tomas - Decker, Barbora - Tuzil, Jan - Turkova, Barbora - Doleckova, Katerina - Koznarova, Barbora - Zabranska, Simona - Blazkova, Tereza - Dolezal, Helena - Pilnackova, Barbora - Doležal, Tomáš
PY  - 2025
TI  - Life With Cystic Fibrosis: The Socioeconomic Impact on Patients and Their Caregivers
JF  - Value in Health Regional Issues
VL  - 47
IS  - May 2025
SP  - 1-9
EP  - 1-9
PB  - Elsevier
SN  - 22121099
KW  - caregiver burden
KW  - cystic fibrosis
KW  - productivity costs
KW  - quality of life
KW  - societal burden
UR  - https://www.sciencedirect.com/science/article/pii/S221210992500010X?pes=vor&utm_source=clarivate&getft_integrator=clarivate
N2  - 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 103 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.
ER  -

MLCOCH, Tomas; Barbora DECKER; Jan TUZIL; Barbora TURKOVA; Katerina DOLECKOVA; Barbora KOZNAROVA; Simona ZABRANSKA; Tereza BLAZKOVA; Helena DOLEZAL; Barbora PILNACKOVA a Tomáš DOLEŽAL. Life With Cystic Fibrosis: The Socioeconomic Impact on Patients and Their Caregivers. \textit{Value in Health Regional Issues}. AMSTERDAM: Elsevier, 2025, roč.~47, May 2025, s.~1-9. ISSN~2212-1099. Dostupné z: https://doi.org/10.1016/j.vhri.2025.101085.

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