Abstract Number: PB0343
Meeting: ISTH 2020 Congress
Background: Hemophilia A (HA) is an X-chromosome linked inherited bleeding disorder characterized by decreasing coagulation factor VIII (FVIII), and is associated with significant disease burden. As a member of the World Federation of Hemophilia (WFH), China has made remarkable progress in the past 30 years to understand the current epidemiology and disease profile of HA patients through the Hemophilia Treatment Center Collaboration Network of China (HTCCNC).
Aims: To better understand the development of hemophilia management in China.
Methods: HTCCNC enabled collaborative web-based data collection of hemophilia patients encountered from the 166 member hospitals (2007-2019). Patient demographics, disease severity, and key clinical and treatment information were summarized using descriptive statistics.
Results: HTCCNC has identified 17,779 diagnosed patients with HA during the study period, and 13,146 patients had lab-measured disease severity. The number of patients categorized to be severe (< 1% of normal activity), moderate (1-5% of normal activity), and mild (5-40% of normal activity) was 6,519, 4,788 and 1,809, respectively. Among all patients, 5,038 (28.34%) patients had family history of HA. Based on 2,619 patients with treatment information, delayed diagnose and delayed treatment remain significant challenges in current care for HA in China. In average, patients had 8.38 ± 10.82 (mean ± SD) years' gap between the time of first bleed to the time of diagnosis. The delay from the first bleed to the original treatment was 8.64 ± 10.51 (mean ± SD) years. Near half (44.29%) of patients relied solely on on-demand treatments, and 16.2% received any prophylaxis treatments (e.g., intermittent/primary/secondary/tertiary).
Conclusions: Beyond systematic training and education, HTCCNC has made significant progress in data collection with the support from WFH. Results based on current data highlighted the unmet need and indicated that disease awareness and treatment accessibility are key challenges to improve patient outcomes in China.
To cite this abstract in AMA style:Song X, Zhong J, Xue F, Chen L, Li H, Yuan D, Xie J, Shi J, Zhang L, Wu EQ, Yang R, Analysis Group , I, Beijing , China . An Overview of Patients with Hemophilia A in China: Epidemiology, Disease Severity, and Treatment Strategies [abstract]. Res Pract Thromb Haemost. 2020; 4 (Suppl 1). https://abstracts.isth.org/abstract/an-overview-of-patients-with-hemophilia-a-in-china-epidemiology-disease-severity-and-treatment-strategies/. Accessed January 28, 2022.
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