Potential Undiagnosed VWD Or Other Mucocutaneous Bleeding Disorder Cases Estimated From Private Medical Insurance Claims

INTRODUCTION: Von Willebrand disease (VWD) is a common inherited bleeding disorder, but awareness among health care professionals is low. We estimated the number of cases of undiagnosed VWD or other mucocutaneous bleeding disorders among commercially insured patients in the United States with a recent history of bleeding events. METHODS: Patients with a VWD diagnosis who were users of or candidates for von Willebrand factor replacement were identified from the IMS PharMetrics Plus Database (2006–2015). We constructed a unary patient-finding model based on 12 prediagnosis variables that best defined this population, and applied this to undiagnosed patients with recent bleeding events from the same database. Cases of symptomatic undiagnosed VWD or other mucocutaneous bleeding disorders in the commercially insured population were estimated from the “best fit” (positive predictive value [PPV] 83%) and “good fit” (PPV 75%) patients thus identified. RESULTS: Overall, 507,668 undiagnosed patients with recent bleeding events were identified (86% female, 14% male). Application of the VWD model identified 3318 best-fit and 37,163 good-fit patients; 91% of best-fit patients were females aged <46 years, with heavy menstrual bleeding as the most common claim. Projection to the full commercially insured US population suggested that 35,000–387,000 patients may have symptomatic, undiagnosed VWD or other mucocutaneous bleeding disorders. DISCUSSION: Computer modeling suggests there may be a significant number of patients with symptomatic, undiagnosed VWD or other mucocutaneous bleeding disorder in the commercially insured population. Enhanced awareness of VWD symptoms and their impact, and of screening and testing procedures, may improve the diagnosis of VWD and reduce disease burden.