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Objective

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.

Methods

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.

Results

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.

Conclusion

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.