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

Publikation: Beitrag in FachzeitschriftArtikelForschungPeer-Review

Autoren

  • 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

Externe Organisationen

  • Hopital Hotel-Dieu AP-HP
  • Institut national de la santé et de la recherche médicale (INSERM)
  • Universite Paris XII
  • Universidad de Castilla-La Mancha
  • Red de Investigación en Servicios Sanitarios en Enfermedades Crónicas (REDISSEC)
  • Fundación Canaria de Investigación Sanitaria (FUNCANIS)
  • Servicio canario de la Salud
  • Istituto Superiore di Sanita
  • Istituto di Ricerche Farmacologiche Mario Negri
  • Institute for rare diseases (IRD)
  • Medical University of Plovdiv
  • Corvinus University of Budapest
  • London School of Economics and Political Science
  • The Swedish Institute for Health Economics (IHE)
  • Università Commerciale Luigi Bocconi
  • Universite Paris 7
  • Institute of Rare Diseases Research (IIER)
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Details

OriginalspracheEnglisch
Seiten (von - bis)7-18
Seitenumfang12
FachzeitschriftEuropean Journal of Health Economics
Jahrgang17
Ausgabenummer1
Frühes Online-Datum8 Apr. 2016
PublikationsstatusVeröffentlicht - Apr. 2016

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.

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Social/economic costs and health-related quality of life in patients with cystic fibrosis in Europe. / Chevreul, Karine; Michel, Morgane; Brigham, Karen Berg et al.
in: European Journal of Health Economics, Jahrgang 17, Nr. 1, 04.2016, S. 7-18.

Publikation: Beitrag in FachzeitschriftArtikelForschungPeer-Review

Chevreul, K, Michel, M, Brigham, KB, López-Bastida, J, Linertová, R, Oliva-Moreno, J, Serrano-Aguilar, P, Posada-de-la-Paz, M, Taruscio, D, Schieppati, A, Iskrov, G, Péntek, M, von der Schulenburg, JMG, Kanavos, P, Persson, U & Fattore, G 2016, 'Social/economic costs and health-related quality of life in patients with cystic fibrosis in Europe', European Journal of Health Economics, Jg. 17, Nr. 1, S. 7-18. https://doi.org/10.1007/s10198-016-0781-6
Chevreul, K., Michel, M., Brigham, K. B., López-Bastida, J., Linertová, R., Oliva-Moreno, J., Serrano-Aguilar, P., Posada-de-la-Paz, M., Taruscio, D., Schieppati, A., Iskrov, G., Péntek, M., von der Schulenburg, J. M. G., Kanavos, P., Persson, U., & Fattore, G. (2016). Social/economic costs and health-related quality of life in patients with cystic fibrosis in Europe. European Journal of Health Economics, 17(1), 7-18. https://doi.org/10.1007/s10198-016-0781-6
Chevreul K, Michel M, Brigham KB, López-Bastida J, Linertová R, Oliva-Moreno J et al. Social/economic costs and health-related quality of life in patients with cystic fibrosis in Europe. European Journal of Health Economics. 2016 Apr;17(1):7-18. Epub 2016 Apr 8. doi: 10.1007/s10198-016-0781-6
Chevreul, Karine ; Michel, Morgane ; Brigham, Karen Berg et al. / Social/economic costs and health-related quality of life in patients with cystic fibrosis in Europe. in: European Journal of Health Economics. 2016 ; Jahrgang 17, Nr. 1. S. 7-18.
Download
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title = "Social/economic costs and health-related quality of life in patients with cystic fibrosis in Europe",
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{\textquoteright} 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.",
keywords = "Costs and cost analysis, Cystic fibrosis, Economic burden, Health-related quality of life",
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note = "Funding Information: Supported by the Social/Economic Burden and Health-Related Quality of Life in Patients with Rare Diseases in Europe Project, which received funding from the European Union within the framework of the Health Programme [Grant A101205]. The Executive Agency of the European Union is not responsible for any use that may be made of the information contained herein. ",
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Download

TY - JOUR

T1 - Social/economic costs and health-related quality of life in patients with cystic fibrosis in Europe

AU - Chevreul, Karine

AU - Michel, Morgane

AU - Brigham, Karen Berg

AU - López-Bastida, Julio

AU - Linertová, Renata

AU - Oliva-Moreno, Juan

AU - Serrano-Aguilar, Pedro

AU - Posada-de-la-Paz, Manuel

AU - Taruscio, Domenica

AU - Schieppati, Arrigo

AU - Iskrov, Georgi

AU - Péntek, Márta

AU - von der Schulenburg, Johann Matthias Graf

AU - Kanavos, Panos

AU - Persson, Ulf

AU - Fattore, Giovani

N1 - Funding Information: Supported by the Social/Economic Burden and Health-Related Quality of Life in Patients with Rare Diseases in Europe Project, which received funding from the European Union within the framework of the Health Programme [Grant A101205]. The Executive Agency of the European Union is not responsible for any use that may be made of the information contained herein.

PY - 2016/4

Y1 - 2016/4

N2 - 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.

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KW - Cystic fibrosis

KW - Economic burden

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