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

Kód výsledku v 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>

Nalezeny alternativní kódy

RIV/00216224:14110/25:00142678

Výsledek na webu

<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>

Jazyk výsledku

angličtina

Název v původním jazyce

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

Popis výsledku v původním jazyce

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.

Název v anglickém jazyce

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

Popis výsledku anglicky

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.

Druh

J_imp - Článek v periodiku v databázi Web of Science

CEP obor

—

OECD FORD obor

30304 - Public and environmental health

Projekt

—

Návaznosti

V - Vyzkumna aktivita podporovana z jinych verejnych zdroju

Rok uplatnění

2025

Kód důvěrnosti údajů

S - Úplné a pravdivé údaje o projektu nepodléhají ochraně podle zvláštních právních předpisů

Název periodika

Value in Health Regional Issues

ISSN

2212-1099

e-ISSN

2212-1102

Svazek periodika

47

Číslo periodika v rámci svazku

May

Stát vydavatele periodika

US - Spojené státy americké

Počet stran výsledku

9

Strana od-do

101085

Kód UT WoS článku

001426051300001

EID výsledku v databázi Scopus

2-s2.0-85217110082