Women often face an uphill challenge getting a correct diagnosis for bleeding disorders. Understandably, most primary healthcare providers are not as likely as a specialist in bleeding disorders to link frequent nosebleeds, bruising or heavy menstrual bleeding to an underlying bleeding disorder. Because of this, many women go undiagnosed and remain at risk for life-threatening bleeding.
To assist gynecologists, primary care physicians and other health practitioners in diagnosing bleeding disorders more readily, the National Hemophilia Foundation (NHF), Impact Education, the Postgraduate Institute for Medicine (PIM) and the Centers for Disease Control and Prevention (CDC) have collaborated on a new series of educational webinars for providers. (Support for the webinars comes from CDC and Shire.) Developed in conjunction with hematologists and ob/gyns who have experience treating women with bleeding disorders, the webinars are entitled, “Improving Outcomes for von Willebrand Disease and Other Bleeding Disorders in Non-Hematology Health Care Settings.”
Meeting a need
“We aren’t on the front lines, so it’s important to educate those on the front lines,” says pediatric hematologist/oncologist Robert F. Sidonio, Jr., MD, clinical director of hemostasis/thrombosis for the Aflac Cancer and Blood Disorders Center of Children’s Healthcare of Atlanta and one of the hematologists who contributed to the webinars. “The goal was to really address the educational needs in non-hematology specialist sections.”
Gynecologists, in particular, may not think beyond fibroids or a hormone imbalance when a patient complains of heavy periods, but von Willebrand disease (VWD) or another bleeding disorder should be considered.
“Many times, clinicians think about bleeding as a uterine problem or a gynecologic problem,” says Gloria Bachmann, MD, professor of obstetrics and gynecology at Robert Wood Johnson Medical School in New Jersey. “There’s often a delay in the diagnosis of a bleeding disorder, because it never reached the radar screen of the woman’s health provider.”
Such a delay can have serious consequences, particularly for pregnant women with bleeding disorders, as there’s a high risk of postpartum hemorrhage and other complications after delivery.
NHF’s three-part provider webinar series focuses on the importance of screening female patients for bleeding disorders. The webinars also stress the importance of additional, and often repeated, lab testing to obtain a diagnosis. Physicians also receive a primer on the current treatment options and additional management considerations for several bleeding disorders. (A related webinar focusing on male patients and undiagnosed VWD launched prior to the ones pertaining to women.)
Healthcare providers also will be able to earn continuing medical education (CME) credits for participating in the webinars and then completing an evaluation. The expert physicians presenting also discuss a few case studies to further engage providers.
Sidonio, who has focused his research on women with bleeding disorders, thinks the webinar series will help women with undiagnosed bleeding disorders spend less time in the dark.
“I feel we need to shine a light on this group and demonstrate the needs and concerns,” Sidonio says. “On average, it takes two years for women to be diagnosed. My work is to reduce that gap.”
- Register for the webinars: impactedu.net/bleeding
- More on bleeding disorders in women: stepsforliving.hemophilia.org/basics-of-bleeding-disorders/bleeding-disorders-in-women
- Victory for Women: victoryforwomen.org