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

IF 1.4 Q3 HEALTH CARE SCIENCES & SERVICES
Tomas Mlcoch MSc , Barbora Decker PhD , Jan Tuzil PhD , Barbora Turkova MSc , Katerina Doleckova MSc , Barbora Koznarova MSc , Simona Zabranska MSc , Tereza Blazkova MSc , Helena Dolezal MSc , Barbora Pilnackova MSc , Tomas Dolezal PhD
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引用次数: 0

Abstract

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.
生活与囊性纤维化:对患者和他们的照顾者的社会经济影响
目的本研究旨在为捷克囊性纤维化(CF)的社会经济负担提供第一个证据。方法在2020年至2021年期间对捷克CF患者进行了基于横断面问卷的原始数据收集,收集了人口统计学、临床和医疗保健资源使用数据、自付和社会转移成本,以及问卷:囊性纤维化问卷修订、工作效率和活动障碍、EQ-5D和Zarit负担访谈。生产力损失/成本采用人力资本方法进行评估,患者假设的预期寿命为45岁,护理人员的退休年龄为64岁,折现3%。结果共257例患者完成问卷调查(占捷克CF患者总数的37%)。平均年龄为17岁;女性占59%,平均1秒用力呼气量为81.4% (SD为25.4%)。共有107名患者的照顾者平均年龄为39岁,照顾者的时间负担很大(每天额外4.6小时)。Zarit Burden访谈的平均得分(25.4)与晚期癌症、痴呆或杜氏肌营养不良相当。失业护理人员的比例是一般人群的10倍(31%对3.2%)。CF相关的总自付家庭费用为每月278欧元,主要用于药品(105欧元)、食品(73欧元)和交通(59欧元);25%领取伤残抚恤金,18%领取其他社会保障福利。在职患者和护理人员的工作障碍分别为25%和15%,主要是由于出勤。所有捷克CF患者(n = 687)及其护理人员的总终身生产力成本外推为155 181 286欧元(225 883欧元/人)。结论捷克CF患者及其照护者的社会负担显著。护理人员似乎比患者更容易受到疾病活动的影响。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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来源期刊
Value in health regional issues
Value in health regional issues Pharmacology, Toxicology and Pharmaceutics-Pharmacology, Toxicology and Pharmaceutics (miscellaneous)
CiteScore
2.60
自引率
5.00%
发文量
127
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