Pain In The Bleeding Disorders Community: Patient And Caregiver Perspectives

Introduction:Pain negatively impacts individuals with bleeding disorders throughout their lives. Despite the high prevalence of pain in this population, the medical literature suggests that 40 to 60% of patients report that their pain is not well controlled. The bleeding disorders community has issued a call to confront this challenge through better prevention of bleeding and subsequent arthropathy and improved assessment and treatment of acute and chronic pain. Current efforts to address these issues lack input from patients and their caregivers (CGs) on how to prioritize specific elements of pain management for future quality improvement and research agendas. The Medical and Scientific Advisory Council of the National Hemophilia Foundation (NHF) created the Pain Initiative Task Force to address these shortcomings. This group aims to contribute to the national effort to improve pain management so that individuals with bleeding disorders can participate fully in their lives.