Reports of Joint Outcomes in Hemophilia Patients

Joint Outcomes in United States (US) Hemophilia Patients: a report of the Community Counts Registry

WFH 2016 (Orlando, July 24-28): Arthropathy or joint disease caused by recurrent bleeding into the joints in patients with hemophilia can cause significant pain and decreased quality of life. The goal of prophylaxis in hemophilia is to prevent or decrease joint bleeding to try to impact joint-related complications. The U.S. Community Counts Registry for Bleeding Disorders Surveillance helps to understand trends in patient outcomes related to disease severity and treatments. Recently, at the World Federation of Haemophilia congress, data from the registry on 5,025 males with hemophilia was presented. The researchers analyzed patient joint outcomes based on severity of disease and past joint disease.  Patient data and blood samples were collected from the U.S. Hemophilia Treatment Centers Network (USHTCN). The results showed that of more than 5000 males with hemophilia A (80%) or B (20%), about two-thirds of patients 20 years of age or older currently receive continuous prophylaxis treatment.  However, the data also showed that significant disease related complications still is a major concern even in these patients. Participation in school/work, chronic pain, opioid use and need for invasive procedures were some of the issues even with young patients currently receiving continuous prophylaxis who may or may not have been treated with primary prophylaxis since being toddlers. Those who received early prophylaxis or immune tolerance induction seemed to achieve better outcomes. In spite of use of prophylaxis, progression of joint disease, persistent pain and need for joint surgeries still remain critical issues in patients with hemophilia.