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[ Recorded presentation ] Recorded presentation

Undiagnosed and Untreated Women with Bleeding Disorders: Results of the National Hemophilia Foundation Survey

Ann-Marie Nazzaro, PhD and Lauren Daitch, MPH. Education Department, National Hemophilia Foundation, 116 West 32nd Street, 11th Floor, New York, NY 10001, (212) 328-3735, anazzaro@hemophilia.org

Research has indicated that most women with von Willebrand disease (VWD), a hereditary bleeding disorder are not diagnosed and treated for it. VWD is the most common bleeding disorder affecting up to 2% of women and men in the U.S. Undiagnosed women are at risk for serious complications including life-threatening bleeding following surgery and potentially unnecessary hysterectomies. The National Hemophilia Foundation with the CDC designed this study to enhance Project Red Flag, a public health education campaign for women’s bleeding disorders. Design/Setting: A national, random sample of 1,444 women aged 18-45, including a national cross section of 1,083 women and oversamples from Atlanta (206) and Detroit (155) were surveyed online by Harris Interactive between August 1-8, 2003. Respondents were screened from Harris Interactive’s online panel. Demographic/propensity weights were applied to the data to ensure that the sample was representative of the U.S. female adult population. Knowledge of VWD was measured. Results: Ninety-one percent of women have never heard of VWD yet 31% of women report having “heavy” periods, a major symptom of VWD. Approximately 54% of the respondents reported that they or someone they knew had sought treatment from a doctor for a heavy period. However not one of these women was diagnosed with VWD. Common diagnoses were fibroids (25%), endometriosis (21%), hormonal imbalance (17%), polyps (8%), and cancer (3%). Fully 17% reported that no diagnosis was made. Results will be used to educate women and their healthcare providers about the symptoms of VWD and encourage appropriate diagnosis and treatment.

Learning Objectives:

Presenting author's disclosure statement:
I do not have any significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.

[ Recorded presentation ] Recorded presentation

Strong Women, Good Health

The 132nd Annual Meeting (November 6-10, 2004) of APHA