OBJECTIVES: Transfusion-dependent β-thalassemia (TDT) is associated with substantial direct cost burden; however, the indirect cost burden for individuals living with TDT has not been well characterized, particularly in Europe. This study describes indirect costs incurred among individuals living with TDT in Europe.

METHODS: A quantitative survey was conducted with individuals with TDT in Europe (France, Germany, Italy, and United Kingdom) and the United States who self-reported ≥8 red blood cell transfusions/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 the average annual salaries in each country per Organization for Economic Co-operation and Development (OECD) average wages indicator.

RESULTS: A total of 61 individuals in Europe completed the survey. Individuals reported conducting health-related activities a mean of 22 hours/month, resulting in an annual cost estimate of $6,345. Mean out-of-pocket costs were $222/month, resulting in annual costs of $2,670. Based on the WPAI, approximately 50% of European individuals were employed (n = 31/61). Among them, mean absenteeism and presenteeism rates were 28.5% and 43.5%, respectively, resulting in an annual loss of $13,972 due to absenteeism and $21,326 due to presenteeism for each employed individual with TDT.

CONCLUSIONS: Individuals with TDT living in Europe had substantial indirect cost burden due to health-related activities, out-of-pocket costs, and workplace absenteeism and presenteeism.