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

verfasst von

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

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.

Organisationseinheit(en)

Center for Health Economics Research Hannover (CHERH)

Externe Organisation(en)

Hopital Hotel-Dieu AP-HP
Institut national de la santé et de la recherche médicale (INSERM)
Universite Paris XII
Universität Kastilien-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
Université Paris VII
Institute of Rare Diseases Research (IIER)

Typ

Artikel

Journal

European Journal of Health Economics

Band

17

Seiten

7-18

Anzahl der Seiten

12

ISSN

1618-7598

Publikationsdatum

04.2016

Publikationsstatus

Veröffentlicht

Peer-reviewed

Ja

ASJC Scopus Sachgebiete

Volkswirtschaftslehre, Ökonometrie und Finanzen (sonstige), Health policy

Ziele für nachhaltige Entwicklung

SDG 3 – Gute Gesundheit und Wohlergehen

Elektronische Version(en)

https://doi.org/10.1007/s10198-016-0781-6 (Zugang: Geschlossen)