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Quality of Life
Social Economic Costs and Health-Related Quality of Life in Patients With Systemic Sclerosis in Spain†
Version of Record online: 24 FEB 2014
Copyright © 2014 by the American College of Rheumatology
Arthritis Care & Research
Volume 66, Issue 3, pages 473–480, March 2014
How to Cite
López-Bastida, J., Linertová, R., Oliva-Moreno, J., Posada-de-la-Paz, M. and Serrano-Aguilar, P. (2014), Social Economic Costs and Health-Related Quality of Life in Patients With Systemic Sclerosis in Spain. Arthritis Care Res, 66: 473–480. doi: 10.1002/acr.22167
- Issue online: 24 FEB 2014
- Version of Record online: 24 FEB 2014
- Accepted manuscript online: 10 SEP 2013 03:32PM EST
- Manuscript Accepted: 3 SEP 2013
- Manuscript Received: 4 DEC 2012
- Social Economic Burden and Health-Related Quality of Life in Patients with Rare Diseases in Europe Project, which has received funding from the European Union in the framework of the Health Programme. Grant Number: A101205
Cost-of-illness analysis is the main method of providing an overall vision of the economic impact of a disease. Such studies have been used to set priorities for health care policies and inform resource allocation. The aim of this study was to determine the economic burden from a societal perspective and health-related quality of life (HRQOL) of patients with systemic sclerosis (SSc; scleroderma) in Spain.
We conducted a cross-sectional, retrospective study of 147 patients with SSc. Data on demographic characteristics, health resource utilization, informal care, labor 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.
The average annual cost for an SSc patient was 荤21,042; the reference year for unit prices was 2011. Direct health care costs amounted to 荤8,235, direct non–health care costs were 荤5,503, and loss of labor productivity was 荤7,303. The largest expenditures were early retirement, informal care, and medication. There are sharp differences in the estimated cost according to the Barthel Index score observed. The mean EQ-5D score for SSc patients was 0.68 and the mean EQ-5D visual analog scale score was 64.
The main strengths of this study lie in our bottom-up approach to costing and in the evaluation of SSc patients from a broad perspective (societal costs). This type of analysis is very scarce in international literature for rare diseases in comparison with other illnesses. We conclude that SSc patients incur considerable societal costs and experience substantial deterioration in HRQOL.