Direct medical costs and related factors for hemophilia A in Jilin Province, China: a cross-sectional study

Haemophilia A is a rare inherited bleeding disorder that requires long-term management and may impose substantial direct medical costs. This study investigate the population of hemophilia A patients in Jilin Province, China, to understand the basic situation of patients, direct medical costs and analysis of its influencing factors. This cross-sectional study used routinely collected data from the Jilin Provincial Hospital Information System. A total of 428 medical and health institutions were selected through multistage stratified cluster random sampling. All patients with an initial diagnosis of hemophilia A in these selected institutions from January 1, 2023, to December 31, 2023, were included. Ultimately, 421 valid visit records were extracted for analysis. The quartile was used to calculate and analyze the composition of direct medical costs, and the influencing factors of direct medical costs in hemophilia A patients were discussed by quantile regression. The median direct medical costs per haemophilia A-related healthcare encounter was US$1,943.60, with drug costs constituting the main component. URBMI accounted for the largest share of recorded costs among encounters involving patients aged 0–14 and 15–64 years, whereas UEBMI accounted for the largest share among those aged ≥ 65 years. Quantile regression showed that age and medical payment method were associated with direct medical costs at selected quantiles. Compared with patients aged 0–14 years, those aged 15–64 years had significantly higher direct medical costs at the 25th and 50th percentiles. Patients aged ≥ 65 years had significantly higher direct medical costs at the 25th percentile but significantly lower direct medical costs at the 90th percentile. Compared with UEBMI, URBMI was associated with lower direct medical costs at the 75th percentile, while entirely self-paying patients had significantly lower direct medical costs from the 25th to the 90th percentiles. Commercial insurance was associated with higher direct medical costs in the lower three quantiles ( p < 0.05). While descriptive statistics suggested that institutional type and level were associated with higher costs, this finding was primarily driven by a small subset of six high-cost records (1.43% of the sample). Sensitivity analyses excluding these records attenuated the effect of institutional characteristics. Direct medical costs for haemophilia A were primarily driven by medication expenditure, and the factors associated with costs differed across the cost distribution. The use of quantile regression to identify factors associated with direct medical costs may facilitate more targeted cost management for patients with haemophilia A. Efforts should focus on improving outpatient reimbursement, promoting guideline-based prophylactic treatment, strengthening multidisciplinary care, and optimizing standardized management to reduce the economic burden on patients.