More Screening Needed for Young Females at Risk for von Willebrand Disease

More Screening Needed for Young Females at Risk for von Willebrand Disease 1024 575 Mary Bates, PhD
Black and white image of teen girl posing outside

A new study finds most girls with heavy menstrual bleeding are not screened for the bleeding disorder.

Despite recommendations by the American College of Obstetricians and Gynecologists, approximately 90 percent of girls with heavy menstrual bleeding are not being screened for von Willebrand disease, according to a new study from Nationwide Children’s Hospital.

“Von Willebrand disease is one of the most common bleeding disorders we see in pediatric hematology,” says Sarah O’Brien, MD, MSc, a pediatric hematologist at Nationwide Children’s and lead author of the study.

Although patients can present with different symptoms, some of the most common signs of the bleeding disorder are heavy menstrual bleeding, easy bruising and nosebleeds. Early diagnosis of von Willebrand disease allows patients and their physicians to plan for future bleeding challenges, such as dental and surgical procedures and childbirth.

In 2001, the American College of Obstetricians and Gynecologists recommended screening adolescents with heavy menstrual bleeding since menarche for von Willebrand disease.

In the new study, published in Obstetrics & Gynecology, Dr. O’Brien and her colleagues used a longitudinal health care insurance claims database to assess the frequency of von Willebrand screening in girls aged 10-17 years with heavy menstrual bleeding. They also examined patient and health care provider factors that affected screening.

In their sample of nearly 24,000 girls, the researchers found that von Willebrand disease screening was performed in only 8 percent of patients with heavy menstrual bleeding. Screening in patients was associated with younger age at diagnosis, commercial insurance, living within a metropolitan area and undergoing testing for iron deficiency.

Dr. O’Brien, who is also associate professor of Pediatrics at The Ohio State University College of Medicine, says there are several barriers to screening.

“One, a patient may have no idea that she has heavy menstrual bleeding because she doesn’t know that her bleeding is different from that of her friends,” she says.

Another issue is that the first two years of menstrual periods can be irregular or heavy due to anovulatory bleeding, so a girl who has recently started to menstruate may be told that her heavy bleeding is normal and should get better on its own.

“It’s important for providers to understand that the presence of anovulatory bleeding does not rule out the presence of an underlying bleeding disorder,” says Dr. O’Brien.

In addition, hormonal contraceptives are usually prescribed for heavy menstrual bleeding and they work well. Once successfully treated, physicians and patients may not go searching for the cause behind the heavy bleeding.

Dr. O’Brien says that it is key for pediatricians to ask young women a few specific questions about their periods during health supervision visits. For example, whether her period lasts for more than seven days or whether she requires more than five or six sanitary products in one day or has to change her product in the middle of the night.

“Von Willebrand disease is a concern for certain patients with warning signs like these, or iron deficiency anemia, other bleeding symptoms such as easy bruising, or a family history of bleeding issues,” she adds. “In these patients, doctors should consider performing laboratory testing for a bleeding disorder.”

Dr. O’Brien also points to the success of Nationwide Children’s Young Women’s Hematology Clinic, which was started about eight years ago to bring together hematology and adolescent medicine.

“Pediatricians were looking to hematology to diagnose bleeding disorders and looking to adolescent medicine to consider management strategies,” says Dr. O’Brien. “By having this clinic, the patient is able to see a hematologist and an adolescent medicine specialist in the same visit and tackle both the laboratory evaluation piece and the management piece together.”


Jacobson AE, Vesely SK, Koch T, Campbell J, O’Brien SH. Patterns of von Willebrand disease screening in girls and adolescents with heavy menstrual bleedingObstetrics & Gynecology 2018;131(6):1121-1129.

Photo credit: Nationwide Children’s

About the author

Mary a freelance science writer and blogger based in Boston. Her favorite topics include biology, psychology, neuroscience, ecology, and animal behavior. She has a BA in Biology-Psychology with a minor in English from Skidmore College in Saratoga Springs, NY, and a PhD from Brown University, where she researched bat echolocation and bullfrog chorusing.