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Patterns of von Willebrand Disease Screening in Girls and Adolescents With Heavy Menstrual Bleeding

Jacobson, Amanda, E., MD; Vesely, Sara, K., PhD; Koch, Terah, MPH; Campbell, Janis, PhD, GISP; O'Brien, Sarah, H., MD, MSc

doi: 10.1097/AOG.0000000000002620
Pediatric and Adolescent Gynecology: Original Research: PDF Only

OBJECTIVE: To estimate the frequency of von Willebrand disease screening and factors that affect screening frequency in a national sample of girls and adolescents with heavy menstrual bleeding.

METHODS: In this retrospective cohort study, we used a national claims database for privately and publicly insured patients between 2011 and 2013 for girls aged 10–17 years. Diagnostic criteria of heavy menstrual bleeding were the presence of one inpatient or two outpatient International Classification of Diseases, 9th Revision codes for heavy menstrual bleeding. We defined severe heavy menstrual bleeding as heavy menstrual bleeding plus an inpatient stay for menstrual bleeding, iron deficiency anemia, or blood transfusion. To assess whether patient- or facility-level characteristics affected screening, we performed logistic regression analysis including patient age, health care provider type seen at first visit for menorrhagia, patient residence in a metropolitan statistical area (proxy for urban vs rural inhabitance), and approximate travel time to the nearest hemophilia treatment center.

RESULTS: We identified 23,888 postpubertal girls and adolescents with heavy menstrual bleeding (986 with severe heavy menstrual bleeding). Von Willebrand disease screening was performed in 8% of females with heavy menstrual bleeding and 16% with severe heavy menstrual bleeding. Younger age at diagnosis, commercial insurance, and living within a metropolitan statistical area were associated with higher screening rates. Patients who underwent testing for iron deficiency anemia had the highest likelihood of undergoing screening (odds ratio 7.08, 95% CI 6.32–7.93). Among patients living in a metropolitan statistical area, those 60 minutes or more from a hemophilia treatment center were less likely to undergo screening.

CONCLUSION: Despite recommendations by the American College of Obstetricians and Gynecologists for more than 15 years, fewer than 20% of postpubertal girls and adolescents with heavy menstrual bleeding underwent screening for von Willebrand disease in this cohort. Increased clinician awareness and adherence to recommended screening recommendations may increase diagnosis of von Willebrand disease.

Despite more than 15 years of American College of Obstetricians and Gynecologists' recommendations, fewer than 10% of postpubertal girls and adolescents with heavy menstrual bleeding are screened for von Willebrand disease.

Division of Pediatric Hematology/Oncology, Nationwide Children's Hospital/The Ohio State University, Columbus, Ohio; the Department of Biostatistics and Epidemiology, College of Public Health, University of Oklahoma Health Sciences Center, Oklahoma City, Oklahoma; and the Center for Innovation in Pediatric Practice, the Research Institute at Nationwide Children's Hospital, Columbus, Ohio.

Corresponding author: Amanda E. Jacobson, MD, 700 Children's Drive, Columbus, OH 43205; email:

Funding for this research was provided by the National Heart, Lung and Blood Institute (R21 HL129019).

Each author has indicated that he or she has met the journal's requirements for authorship.

Financial Disclosure The authors did not report any potential conflicts of interest.

© 2018 by The American College of Obstetricians and Gynecologists. Published by Wolters Kluwer Health, Inc. All rights reserved.