Background: The management of hemophilia is critical to minimize risk of disability and reduce burden on China’s health care system, and key initiatives have been taken in China to raise disease awareness and enhance treatment availability.

Aims: The present study based on a single center in Tianjin, China was conducted to understand the devolvement of real-world hemophilia care over the past 15 years.

Methods: This study retrospectively analyzed the key clinical characteristics, diagnosis, treatment, and medical expenditures of 428 patients with hemophilia A (HA) or hemophilia B (HB) in the Institute of Hematology & Blood Diseases Hospital (IHBDH) in Tianjin, China.

Results: Between January 2004 and December 2018, 357 patients with HA and 71 patients with HB seek care in the IHBDH. Over the years, the average gap between the diagnosis and the first bleeding decreased significantly from 13.3±5.1 years before 2004 to 0.4±0.4 year in 2014-2018 (p< 0.05). Among children and adults receiving prophylaxis treatment, the total factor consumption per year increased from the period between 2004-2008 to the period between 2009-2013 (168.8 vs 389.2 IU/kg in children, 120.7 vs 316.2 IU/kg in adults, respectively, both p< 0.001) and 2014-2018 (168.8 vs 1328.0 IU/kg in children, 120.7 vs 878.8 IU/kg in adults, respectively, both p< 0.001). Similar trends of total factor consumption were observed in patients receiving on-demand treatment (Figure 1). Number of patients receiving inhibitor tests regularly increased from 2004 (1.9%, 2/105) to 2018 (21.5%, 59/275), while rates of positive inhibitor remained unchanged. The seroprevalence of hepatitis C virus (HCV) was 33.8% across the years, while the incidence rates of HCV among patients with hemophilia dropped significantly (7.3% in 2008 to 0.4% in 2018). Meanwhile, the total annual medical insurance expenditure for hemophilia had increased steadily in the past 10 years (Figure 2).

Conclusions:

[FIGURE 1 Change of treatment. A Percentage of prophylaxis in children. B Percentage of prophylaxis in adults. C Total dose of factor consumption of pa]

[FIGURE 2 Changes of medical insurance costs for hemophilia in past 10 years. The costs were increasing every year.]

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ISTH Congress Abstracts - https://abstracts.isth.org/abstract/real-world-analysis-of-hemophilia-patients-in-china-a-single-centers-experience/