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保加利亚囊性纤维化患者的经济负担及与健康相关的生活质量

Economic Burden And Health-Related Quality Of Life Of Patients With Cystic Fibrosis In Bulgaria.

作者信息

Iskrov Georgi G, Stefanov Rumen S, López-Bastida Julio, Linertová Renata, Oliva-Moreno Juan, Serrano-Aguilar Pedro

机构信息

Department of Social Medicine and Public Health, Faculty of Public Health, Medical University, Plovdiv, Bulgaria

Institute for Rare Diseases, Plovdiv, Bulgaria

出版信息

Folia Med (Plovdiv). 2015 Jan-Mar;57(1):56-64. doi: 10.1515/folmed-2015-0020.

Abstract

OBJECTIVE

The aim of this study was to determine the economic burden from a societal perspective and health-related quality of life (HRQOL) of patients with cystic fibrosis (CF) in Bulgaria.

MATERIALS AND METHODS

We conducted a cross-sectional study of 33 patients with CF and 17 caregivers from Bulgaria. Data on socio-demographic characteristics, health resource utilisation, informal care, labor productivity losses and HRQOL were collected from questionnaires completed by patients or their caregivers. HRQOL was evaluated with the EuroQol 5-domain (EQ-5D-3L) questionnaire.

RESULTS

Median annual costs of CF in Bulgaria were € 24 152 per patient in 2012 as a reference year. Median annual costs for children were found to be significantly higher than those for adults - € 31 945 vs. € 15 714 (p = 0.012). This outcome came from statistically significant differences in costs for main informal carer (p < 0.001) and costs for other informal carers (p = 0.022). As a single cost item, drugs had the biggest monetary impact. Median annual drug costs were € 13 059. Bulgarian CF patients showed low HRQOL results - 50 median VAS score and 0.592 median health utilities. A quarter of patients even rated their health state as worse than death.

CONCLUSION

CF patients from Eastern Europe remain a vulnerable population with risk factors for worse health outcomes. Our study provided a state-of-the art analysis that facilitates the elaboration, adoption and application of targeted public health policies to tackle CF-related problems at national and European level.

摘要

目的

本研究旨在从社会角度确定保加利亚囊性纤维化(CF)患者的经济负担及与健康相关的生活质量(HRQOL)。

材料与方法

我们对来自保加利亚的33例CF患者和17名照料者进行了横断面研究。通过患者或其照料者填写的问卷收集社会人口学特征、卫生资源利用、非正式照料、劳动生产率损失及HRQOL等数据。采用欧洲五维健康量表(EQ-5D-3L)问卷评估HRQOL。

结果

以2012年为参照年,保加利亚CF患者的年费用中位数为每人24152欧元。发现儿童的年费用中位数显著高于成人,分别为31945欧元和15714欧元(p = 0.012)。这一结果源于主要非正式照料者费用(p < 0.001)和其他非正式照料者费用(p = 0.022)的统计学显著差异。作为单一费用项目,药物产生的货币影响最大。年药物费用中位数为13059欧元。保加利亚CF患者的HRQOL结果较低,视觉模拟量表(VAS)得分中位数为50,健康效用值中位数为0.592。四分之一的患者甚至将其健康状况评为比死亡还差。

结论

来自东欧的CF患者仍然是一个弱势群体,存在健康结局较差的风险因素。我们的研究提供了一项前沿分析,有助于制定、采用和应用有针对性的公共卫生政策,以在国家和欧洲层面解决与CF相关的问题。

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