OBJECTIVE: While β-thalassemia has a high prevalence in China, its cost burden has not been assessed in the adult population. This study aims to demonstrate the economic burden of transfusion-dependent β-thalassemia in adult patients within the Chinese healthcare system setting.

METHODS: Searches of Google Scholar and a survey were conducted to identify clinical data, healthcare practices, and related costs. Keywords “β-thalassemia”, specific complications, and “cost” were used. The cost data from the literature were adjusted to the year 2021 based on the Consumer Price Index. The patient annual expected complication cost was calculated based on incidence and costs. The formula was: expected cost = ∑P_i *cost_i.

RESULTS: Total 136 studies were identified in the search, 15 studies were included after text screening. The annual treatment cost for an adult patient with β-thalassemia in China was Chinese yen (CNY) 83,464, which included a transfusion cost of CNY 8,593 using 39 red blood cell units, iron chelation therapy cost of CNY 71,282, and other hospital costs of CNY 3,589. The expected cost per patient-year for complications was CNY 100,684. The nonmedical direct cost was CNY 51,896, which included transportation, accommodations, catering expenses, and nursing fees. The average indirect cost of disease-related loss of working time to the patient and their family was CNY 31,660. The average intangible cost due to disease-related psychological impact was CNY 392,939. The total costs added up to be CNY660,643.

CONCLUSIONS: The expected cost per patient-year for complications was substantial, as were the nonmedical direct costs. However, the indirect and intangible cost burden to patients was even higher due to time off work and mental health ramifications. These data suggest that both indirect and direct costs of β-thalassemia should be considered in the healthcare policy decision making process.