Population Screening for Von Willebrand's Disease in Adolescents with Heavy Menstrual Bleeding

Heavy menstrual bleeding (HMB) is the most common presenting symptom in women with von Willebrand's disease (VWD), reported in 80–90% of patients. The American Congress of Obstetricians and Gynecologists recommends that VWD screening be performed in all adolescents presenting with severe menorrhagia; however, the frequency of VWD screening in clinical practice remains unknown. Combining administrative health claims data and electronic medical records from a large population of Ohio Medicaid-enrolled adolescents, our objectives were to determine the frequency of 1) VWD screening and 2) new patient evaluations at a hemophilia treatment center in adolescents with HMB. We also sought to determine what patient-level factors predicted VWD screening.

The data for this study were obtained from Partners for Kids, an accountable care organization providing health care for Medicaid patients in Central (Columbus, OH and surrounding counties) and Southeastern Ohio (rural counties). Our study population included females 10–17 years of age with two or more ICD-9-CM diagnoses of HMB (626.2, 626.3, 626.8) continuously enrolled in Partners for Kids for at least 6 months prior to and 12 months following first diagnosis of HMB. We defined severe HMB as HMB plus one of the following clinical features appearing in the 12 months following first diagnosis: 1) inpatient stay for HMB, 2) iron deficiency anemia (ICD-9 codes 280.0, 280.8, 280.9), or 3) evidence of blood transfusion (CPT code 36430). We extracted data from Partners for Kids regarding patient age, county of residence, inpatient and outpatient diagnoses and procedures, and laboratory testing. By linking patient name and date of birth to electronic medical records at Nationwide Children's Hospital (the pediatric hemophilia treatment center for Central and Southeastern Ohio), we determined which patients had a hematology visit since time of first HMB diagnosis.

Our study included 673 patients, 16% of whom met study definition for severe HMB. VWD screening occurred in only 10% of the total study population, but was significantly higher (24%) in patients with severe HMB (p <0.001). Patients living in Central Ohio (location of the region's hemophilia treatment center) were more likely to be screened for VWD (OR 2.1, p <0.03) than patients in Southeastern Ohio. When compared to 15–17 year olds, the youngest patients (aged 10–11 years) were more likely to be screened for VWD (OR 3.6, 95% C.I.: 1.6–8.1, p =0.002), and 12–14 year olds were also more likely to be screened than the oldest patients (OR 2.7, 95% C.I.: 1.5–4.8, p =0.001). Fifty-one (7.6%) patients were seen by the regional hemophilia treatment center.

Almost 10% of all patients had a diagnosis of iron deficiency anemia, although only 26% of patients were screened for this common complication of HMB. Though only 3% of the study population (11% of the severe HMB population) was diagnosed with a bleeding disorder within 1 year of diagnosis of HMB, over a third of these (36%) were VWD. The prevalence of platelet function defects was similar to VWD.

Despite recommendations by the American Congress of Obstetricians and Gynecologists, VWD screening is performed in a minority of adolescents with HMB, even among those with the most severe disease. Given the low rates of screening, our population reported frequencies of inherited bleeding disorders in adolescents with HMB are likely under-estimates. The low rate of screening for iron deficiency anemia in adolescents with HMB is also of concern. Future studies are needed to identify and overcome barriers to laboratory screening for inherited bleeding disorders in young women with HMB.

1. Laboratory Evaluation and Final Diagnoses in Adolescents with Heavy Menstrual Bleeding

O'Brien:GSK: Consultancy, topic not relevant to this paper Other.