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

authored by

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.

Organisation(s)

Center for Health Economics Research Hannover (CHERH)

External Organisation(s)

Universidad de Castilla-La Mancha
Red de Investigación en Servicios Sanitarios en Enfermedades Crónicas (REDISSEC)
Canary Islands Foundation for Health Research (FUNCANIS)
Canary Islands Health Service
London School of Economics and Political Science
Istituto Superiore di Sanita
Institute of Pharmacological Research Mario Negri IRCCS
Institute of Rare Diseases
Medical University of Plovdiv
Corvinus University of Budapest
Federación Española de Enfermedades Raras (FEDER)
The Swedish Institute for Health Economics
AP-HP Assistance Publique - Hopitaux de Paris
Institut national de la santé et de la recherche médicale (INSERM)
Università Commerciale Luigi Bocconi
Institute of Health Carlos III (ISCIII)
Universite Paris 7

Type

Article

Journal

European Journal of Health Economics

Volume

17

Pages

109-117

No. of pages

9

ISSN

1618-7598

Publication date

04.2016

Publication status

Published

Peer reviewed

Yes

ASJC Scopus subject areas

Economics, Econometrics and Finance (miscellaneous), Health Policy

Sustainable Development Goals

SDG 3 - Good Health and Well-being

Electronic version(s)

https://doi.org/10.1007/s10198-016-0789-y (Access: Closed)