Establishment of a Web-Based Documentation System for Quality Assurance of Hemophilia Treatment in Mecklenburg/Western Pomeranian: a Pilot Study

The quality of the overall management of hemophilia critically depends on the communication between patients, primary care physicians and specialized treatment centers. In addition to the management of acute bleeding events and infectious issues, diagnostic and therapeutic approaches to diseases not primarily associated with the inherited bleeding tendency require increasing awareness. The latter issue has received little attention. We selected an internet-based database approach to overcome this shortage of information. Within four years of its implementation, we have documented data obtained from patients with hemophilia (n = 131) and von Willebrand’s disease (n=18) aged between 12 and 84 years. An optimized substitution regimen was introduced for 46 patients and fully documented. Additional aspects toward improved overall quality included the diagnosis and treatment of viral infections (n = 22) and documentation and completion of vaccination status (n = 26). Conservative and/or surgical treatment of the skeletal system was started in 48 patients. Cardiovascular surgery was performed in 8 patients requiring a multi-team approach to the hemostaseological management before, during, and after surgery. Two hemophilia patients started regular hemodialysis for chronic kidney failure under optimized coagulation control. Four patients received chemotherapy for malignancy. Laboratory diagnosis and monitoring data are available from 56 patients. The continuous communication between patients, primary care providers, and specialized centers is a prerequisite for acute bleeding events as well as accompanying diseases. Based on our experience over the last four years, the web-based documentation approach represents a helpful communication tool to improve care provided for patients suffering from bleeding disorders.