Social/economic costs and health-related quality of life in patients with scleroderma in Europe
Julio López-Bastida (),
Juan Oliva (),
Manuel Posada- de-la-Paz,
Johann Mathias Schulenburg,
Karine Chevreul and
Additional contact information
Julio López-Bastida: Universidad de 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: SpainRDR and CIBERER
Panos Kanavos: London School of Economics and Political Science
Domenica Taruscio: Istituto Superiore di Sanità (ISS)
Arrigo Schieppati: Istituto di Ricerche Farmacologiche Mario Negri
Georgi Iskrov: Institute of Rare Diseases
Claudia Delgado: Federación Española de Enfermedades Raras (FEDER)
Johann Mathias Schulenburg: Leibniz Universität Hannover
Ulf Persson: Swedish Institute for Health Economics
Karine Chevreul: URC Eco Ile de France, AP-HP
Giovanni Fattore: Bocconi University
The European Journal of Health Economics, 2016, vol. 17, issue 1, 109-117
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.
Keywords: Scleroderma; Systemic sclerosis; Localised scleroderma; Cost of illness; Health-related quality of life; Economic burden (search for similar items in EconPapers)
References: View references in EconPapers View complete reference list from CitEc
Citations: View citations in EconPapers (3) Track citations by RSS feed
Downloads: (external link)
http://link.springer.com/10.1007/s10198-016-0789-y Abstract (text/html)
Access to the full text of the articles in this series is restricted.
This item may be available elsewhere in EconPapers: Search for items with the same title.
Export reference: BibTeX
RIS (EndNote, ProCite, RefMan)
Persistent link: https://EconPapers.repec.org/RePEc:spr:eujhec:v:17:y:2016:i:1:d:10.1007_s10198-016-0789-y
Ordering information: This journal article can be ordered from
http://www.springer. ... cs/journal/10198/PS2
Access Statistics for this article
The European Journal of Health Economics is currently edited by J.-M.G.v.d. Schulenburg
More articles in The European Journal of Health Economics from Springer, Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ) Contact information at EDIRC.
Bibliographic data for series maintained by Sonal Shukla ().