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

Karine Chevreul (), Morgane Michel, Karen Berg Brigham, Julio López-Bastida, Renata Linertová, Juan Oliva (), Pedro Serrano-Aguilar, Manuel Posada- de-la-Paz, Domenica Taruscio, Arrigo Schieppati, Georgi Iskrov, Márta Péntek, Johann Matthias Graf Schulenburg, Panos Kanavos, Ulf Persson and Giovani Fattore
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Karine Chevreul: URC Eco Ile de France, AP-HP, Hôtel Dieu
Morgane Michel: URC Eco Ile de France, AP-HP, Hôtel Dieu
Karen Berg Brigham: URC Eco Ile de France, AP-HP, Hôtel Dieu
Julio López-Bastida: University of Castilla-La Mancha
Renata Linertová: Red de Investigación en Servicios Sanitarios en Enfermedades Crónicas (REDISSEC)
Pedro Serrano-Aguilar: Red de Investigación en Servicios Sanitarios en Enfermedades Crónicas (REDISSEC)
Manuel Posada- de-la-Paz: Institute of Rare Diseases Research, ISCIII, SpainRDR and CIBERER
Domenica Taruscio: Istituto superiore di sanita (ISS)
Arrigo Schieppati: Istituto di Ricerche Farmacologiche Mario Negri
Georgi Iskrov: Institute of Rare Diseases
Johann Matthias Graf Schulenburg: Leibniz Universität Hannover
Panos Kanavos: London School of Economics and Political Science
Ulf Persson: The Swedish Institute for Health Economics
Giovani Fattore: Università Commerciale Luigi Bocconi

The European Journal of Health Economics, 2016, vol. 17, issue 1, No 2, 7-18

Abstract: 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

Keywords: Cystic fibrosis; Health-related quality of life; Costs and cost analysis; Economic burden; H51; I18; I12 (search for similar items in EconPapers)
Date: 2016
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Citations: View citations in EconPapers (16)

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DOI: 10.1007/s10198-016-0781-6

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