OBJECTIVES: β-thalassemia is a genetic disease with impaired development and survival of red blood cells (RBCs), leading to chronic anemia and other serious complications. The prevalence of β-thalassemia and its burden to patients and the German healthcare system has not been systematically assessed. The aim of the study was to evaluate the burden of disease of β-thalassemia in Germany.

METHODS: A retrospective claims data analysis utilizing the InGef database was conducted. Prevalent β-thalassemia patients were identified by ICD-10-GM code D56.1 in 2015. The proportion of these patients receiving transfusions was determined by OPS codes for transfusions and PZN for blood products. The prevalence, demographics, the number of received RBC transfusions, reduction in earning capacity, and further healthcare outcomes were assessed for 2015. Patient counts were extrapolated to the German population.

RESULTS: A total of 623 prevalent β-thalassemia patients were identified. Mean age was 42 years and 53% were female. No claims for RBC transfusions were identified in 94.9% (n=591) of patients in 2015. Of the remaining 32 patients with ≥1 RBC transfusion, 71.9% (n=23) received 1-7 RBC transfusions and 28.1% (n=9) had ≥8 transfusions (max. 24 transfusions). Reduction in earning capacity was observed in 3.1% of all β-thalassemia patients compared to 15.6% of patients with ≥1 blood transfusion. Extrapolated to the German population in 2015, about 13,210 patients (95% CI 12,190-14,280) suffered from β-thalassemia and about 680 patients received blood transfusions (95% CI 460-960).

CONCLUSIONS: Claims data analyses can fill in research gaps and provide evidence on epidemiology, patients’ characteristics, and healthcare outcomes. With about 13,200 extrapolated β-thalassemia patients for the German population the burden of disease is significant. The results suggest that particularly β-thalassemia patients requiring transfusions are affected in their daily life. These patients may require more intensive monitoring and could have a higher impact on the statutory health insurance.