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Objective: To assess costs related to systemic sclerosis (SSc) and their determinants.

Methods: The Canadian Scleroderma Research Group is comprised of 15 centers contributing to a registry of adult patients with SSc. Available cross-sectional data included clinical variables and standardized measures of health resource use and time loss. Annualized averages of direct medical costs were calculated by multiplying health service utilization levels by the appropriate unit prices, determined from government fee schedules, professional associations, and other sources. Indirect costs were calculated from the subjects' self-reported time loss related to illness and to seeking health care, as well as caregiver time losses. Costs were represented in 2007 Canadian dollars.

Results: In the sample of 457 patients with SSc, the average direct cost per patient was $5,038 per year (95% confidence interval [95% CI] $4,400, $5,676). Regarding indirect costs, the value of potential productivity loss related to paid labor was estimated at an average of $5,345 per patient per year (95% CI $4,598, $6,092), and the cost of lost productivity related to unpaid labor contributed another $8,070 per patient annually. The average total annual cost was estimated at $18,453 (95% CI $16,598, $20,308) per patient. Total annual costs were strongly associated with younger age, greater disease severity, and poorer health status.

Conclusion: Costs related to SSc are considerable, and there is a high impact of disease severity and health status on economic burden.

(C) 2009, American College of Rheumatology