Patients with von Willebrand disease in China: Results of an online survey

Abstract Introduction Little is known about the clinical characteristics of von Willebrand disease (VWD) patients in China, the impact of Covid‐19 on them and their genetic mutation. Aim To describe the clinical characteristics of a group of VWD patients in China, the impact of Covid‐19 on them and their genetic mutation. Methods An online survey using a self‐designed questionnaire was conducted among patients within a WeChat group of VWD patients in China. Data were analysed using t‐test, the Chi‐square test, Fisher's exact test and rank sum test. Results Data from a total of 96 patients were collected. Several important findings are yielded. Above all, type 3 patients accounted for over half of the surveyed patients. Secondly, a surprising rate (>40%) of patients had experience of being misdiagnosed. Thirdly, treatment regimens were dominated by cryoprecipitate, blood‐derived FVIII and plasma, and only a small percentage of patients received prophylaxis. Fourthly, we identified 17 new von Willebrand factor (VWF) mutant genes which merit further investigation. Additionally, Covid‐19 was found to pose some challenges for the patients. Conclusion In China, the high rates of type 3 patients and misdiagnosis suggest that most of the VWD patients may never be diagnosed in China. When it comes to diagnosis and treatment, there is a large gap between developing countries like China and developed countries.