OBJECTIVES: Sickle cell disease (SCD) is associated with substantial direct cost burden; however, indirect costs have not been well-characterized, particularly in Europe. This study describes indirect costs incurred among individuals with SCD with recurrent vaso-occlusive crises (VOCs) in Europe.

METHODS: A quantitative survey was conducted with individuals with SCD in Europe (France, Germany, Italy, and United Kingdom) and the United States who self-reported ≥2 VOCs/year in each of the 2 years before enrollment. This analysis focused on data from the included European countries. Health-related activities and self-reported out-of-pocket costs were assessed using bespoke survey items. Health-related activities were costed using the proxy good method. Monthly out-of-pocket costs were summed and annualized. The Work Productivity and Activity Impairment (WPAI) questionnaire was used to assess workplace absenteeism and presenteeism. Workplace absenteeism and presenteeism costs were determined based on average annual salaries in each country per Organization for Economic Co-operation and Development (OECD) average wages indicator. Due to the limited number of employed individuals in the European sample, select data on US participants are also reported.

RESULTS: Forty-five individuals in Europe completed the survey. Individuals reported conducting health-related activities a mean of 25 hours/month, resulting in an annual cost estimate of $7,107. Mean out-of-pocket costs were $461/month, resulting in annual costs of $5,527. Based on the WPAI, <30% of European individuals were employed (n = 13/45). Among them, mean absenteeism and presenteeism was 28.8% and 40.8%, respectively, resulting in an annual loss of $14,119 due to absenteeism and $20,002 due to presenteeism per individual. Results from the US sample of employed individuals (N = 35) were broadly similar, with mean absenteeism and presenteeism of 32.9% and 46.2%, respectively.

CONCLUSIONS: Individuals with SCD with recurrent VOCs in Europe had significant indirect cost burden due to health-related activities, out-of-pocket costs, and workplace absenteeism and presenteeism.