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The European Journal of Health Economics
Published in: The European Journal of Health Economics 1/2016

01-04-2016 | Original Paper

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

Authors: 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, The BURQOL-RD Research Network

Published in: The European Journal of Health Economics | Special Issue 1/2016

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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.
Appendix
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Metadata
Title
Social/economic costs and health-related quality of life in patients with scleroderma in Europe
Authors
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
The BURQOL-RD Research Network
Publication date
01-04-2016
Publisher
Springer Berlin Heidelberg
Published in
The European Journal of Health Economics / Issue Special Issue 1/2016
Print ISSN: 1618-7598
Electronic ISSN: 1618-7601
DOI
https://doi.org/10.1007/s10198-016-0789-y

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