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

verfasst von

BURQOL-RD Research Network , Julio López-Bastida, Renata Linertová, Juan Oliva-Moreno, Pedro Serrano-Aguilar, Manuel Posada-de-la-Paz, Panos Kanavos, Domenica Taruscio, Arrigo Schieppati, Georgi Iskrov, Márta Péntek, Claudia Delgado, Johann Mathias von der Schulenburg, Ulf Persson, Karine Chevreul, Giovanni Fattore

Abstract

Objective: The aim of this study was to determine the economic burden from a societal perspective and the health-related quality of life (HRQOL) of patients with systemic sclerosis (SSc; scleroderma) in Europe. Methods: We conducted a cross-sectional study of patients with SSc (involving both localised and systemic sclerosis) from Germany, Italy, Spain, France, the UK, Hungary and Sweden. Data on demographic characteristics, healthcare resource utilisation, informal care, labour productivity losses and HRQOL were collected from the questionnaires completed by patients or their caregivers. HRQOL was measured with the EuroQol 5-domain (EQ-5D) questionnaire. Results: A total of 589 patients completed the questionnaire. The rate of patients with localised scleroderma, limited cutan and diffuse cutan SSc were 28, 68 and 4 %, respectively. Average annual costs varied from country to country and ranged from € 4607 to € 30,797 (reference year: 2012). Estimated direct healthcare costs ranged from € 1413 to € 17,300; direct non-healthcare costs ranged from € 1875 to € 4684 and labour productivity losses ranged from € 1701 to € 14,444. The mean EQ-5D index score for adult SSc patients varied from 0.49 to 0.75 and the mean EQ-5D visual analogue scale score was between 58.72 and 65.86. Conclusion: The main strengths of this study lie in our bottom-up approach to costing and our evaluation of SSs patients from a broad societal perspective. This type of analysis is very unusual in the international literature on rare diseases in comparison with other illnesses. We concluded that SSc patients incur considerable societal costs and experience substantial deterioration in HRQOL.

Organisationseinheit(en)

Center for Health Economics Research Hannover (CHERH)

Externe Organisation(en)

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
London School of Economics and Political Science
Istituto Superiore di Sanita
Istituto di Ricerche Farmacologiche Mario Negri
Institute for rare diseases (IRD)
Medical University of Plovdiv
Corvinus University of Budapest
Federación Española de Enfermedades Raras (FEDER)
The Swedish Institute for Health Economics (IHE)
AP-HP Assistance Publique - Hopitaux de Paris
Institut national de la santé et de la recherche médicale (INSERM)
Università Commerciale Luigi Bocconi
Instituto de Salud Carlos III (ISCIII)
Universite Paris 7

Typ

Artikel

Journal

European Journal of Health Economics

Band

17

Seiten

109-117

Anzahl der Seiten

9

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/s10198-016-0789-y (Zugang: Geschlossen)