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The European Journal of Health Economics
Published in: The European Journal of Health Economics 1/2016

01-04-2016 | Original Paper

Social/economic costs and health-related quality of life in patients with cystic fibrosis in Europe

Authors: Karine Chevreul, Morgane Michel, Karen Berg Brigham, Julio López-Bastida, Renata Linertová, Juan Oliva-Moreno, Pedro Serrano-Aguilar, Manuel Posada-de-la-Paz, Domenica Taruscio, Arrigo Schieppati, Georgi Iskrov, Márta Péntek, Johann Matthias Graf von der Schulenburg, Panos Kanavos, Ulf Persson, Giovani Fattore, BURQOL-RD Research Network

Published in: The European Journal of Health Economics | Special Issue 1/2016

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Abstract

Objectives

Our goal was to provide data on the economic burden and health-related quality of life (HRQOL) of patients with cystic fibrosis (CF) and their caregivers in Europe.

Methods

A cross-sectional study was carried out on adults and children with CF in eight European countries. Patients completed an anonymous questionnaire regarding their socio-demographic characteristics, use of healthcare services and presence of a caregiver. Costs were calculated with a bottom-up approach using unit costs from each participating country, and HRQOL was assessed using EQ-5D. The principal caregiver also answered a questionnaire on their characteristics, HRQOL and burden.

Results

A total of 905 patients with CF was included (399 adults and 506 children). The total average annual cost per patient varied from €21,144 in Bulgaria to €53,256 in Germany. Adults had higher direct healthcare costs than children, but children had much higher informal care costs (P < 0.0001). Total costs increased with patients’ level of dependence. In adults, mean utility fell between 0.640 and 0.870, and the visual analogue scale ranged from 46.0 to 69.7. There was no difference in caregiver HRQOL regardless of whether they cared for an adult or a child. However, caregivers who looked after a child had a significantly higher burden (P = 0.0013).

Conclusions

Our study highlights the burden of CF in terms of costs and decreased HRQOL for both patients and their caregivers throughout Europe.
Appendix
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Metadata
Title
Social/economic costs and health-related quality of life in patients with cystic fibrosis in Europe
Authors
Karine Chevreul
Morgane Michel
Karen Berg Brigham
Julio López-Bastida
Renata Linertová
Juan Oliva-Moreno
Pedro Serrano-Aguilar
Manuel Posada-de-la-Paz
Domenica Taruscio
Arrigo Schieppati
Georgi Iskrov
Márta Péntek
Johann Matthias Graf von der Schulenburg
Panos Kanavos
Ulf Persson
Giovani Fattore
BURQOL-RD Research Network
Publication date
01-04-2016
Publisher
Springer Berlin Heidelberg
Published in
The European Journal of Health Economics / Issue Special Issue 1/2016
Print ISSN: 1618-7598
Electronic ISSN: 1618-7601
DOI
https://doi.org/10.1007/s10198-016-0781-6

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