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法国囊性纤维化患者及其护理人员的费用和健康相关生活质量

Costs and health-related quality of life of patients with cystic fibrosis and their carers in France.

作者信息

Chevreul Karine, Berg Brigham Karen, Michel Morgane, Rault Gilles

机构信息

URC Eco Ile de France, DRCD, Hôtel Dieu, 75004 Paris, France; Université Paris Diderot, Sorbonne Paris Cité, ECEVE, UMRS 1123, 75010 Paris, France; Inserm, ECEVE, U1123, 75010 Paris, France.

URC Eco Ile de France, DRCD, Hôtel Dieu, 75004 Paris, France; Université Paris Est, 94010 Créteil, France.

出版信息

J Cyst Fibros. 2015 May;14(3):384-91. doi: 10.1016/j.jcf.2014.11.006. Epub 2015 Jan 22.

Abstract

BACKGROUND

Our goal was to provide data on the economic burden and health-related quality of life (HRQoL) associated with cystic fibrosis (CF) in France.

METHODS

A retrospective cross-sectional study was carried out on adults and children with CF, who completed an anonymous questionnaire regarding their socio-demographic characteristics, healthcare consumption and presence of a carer. Costs were calculated with a bottom-up approach, and HRQoL was assessed using EQ-5D.

RESULTS

82 adults and 158 children were included. The total average annual cost of CF was €29,746 per patient. Total costs were higher in adults than in children and increased with disease duration. The average utility was lower in adults (0.667 vs. 0.783 in children, p=0.0015). The HRQoL of carers was also affected (0.742 and 0.765 for carers of adults and children with CF, respectively).

CONCLUSIONS

Our study highlights the burden of CF in terms of costs and decreased HRQoL for both patients and carers.

摘要

背景

我们的目标是提供有关法国囊性纤维化(CF)相关经济负担和健康相关生活质量(HRQoL)的数据。

方法

对成年和儿童CF患者进行了一项回顾性横断面研究,这些患者完成了一份关于其社会人口学特征、医疗消费和护理人员情况的匿名问卷。采用自下而上的方法计算成本,并使用EQ-5D评估HRQoL。

结果

纳入了82名成年人和158名儿童。CF患者的平均每年总费用为每人29,746欧元。成年人的总费用高于儿童,且随疾病持续时间增加。成年人的平均效用较低(0.667,儿童为0.783,p = 0.0015)。护理人员的HRQoL也受到影响(CF成年患者和儿童患者的护理人员分别为0.742和0.765)。

结论

我们的研究突出了CF在成本方面的负担以及患者和护理人员HRQoL的下降。

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