4292.0: Tuesday, November 14, 2000 - Board 4

Abstract #1825

Developing a kit to educate the public about von willebrand disease in females: "Women can have bleeding disorders"

Judith R Baker, MHSA, Region IX Hemophilia Program, Childrens Hospital Los Angeles, 4650 Sunset Blvd., Box 54, Los Angeles, CA 90027, 323-669-4560, jrbaker@hsc.usc.edu, Renee B Paper, RN, Hemophilia Foundation of Nevada, P.O. Box 90158, Henderson, NV 89009, and Kelly L Larson, MPH, National Hemophilia Foundation, 116 West 32nd Street, 11th Floor, New York, NY 10001.

Strengthening services to females who have inherited bleeding disorders is a priority of the Maternal and Child Health Bureau, the Centers for Disease Control and Prevention and the National Hemophilia Foundation. A growing body of research documents the extent to which congenital bleeding disorders are at the root of females who clinically present with excessive menstrual periods, frequent or prolonged nosebleeds, easy bruising and prolonged bleeding following surgery, dental work, injury and childbirth. These are they key symptoms of von Willebrand Disease (vWD) which is prevalent in up to 2% of the population.

Studies have begun to quantify vWD-associated morbidity, loss of productivity, psychological disorders, unnecessary surgeries (e.g. hysterectomy), and reduced quality of life. Yet despite its prevalence, adverse effect on health, and the availability of effective treatment, vWD is often overlooked by clinicians and virtually unknown to the public.

In 1998, the National Hemophilia Foundation (NHF) convened a public-private Women and Bleeding Disorders Working Group to devise and implement a national action plan. This kit is a key component of NHF's national women's initiative. It includes a mass media campaign and grass roots outreach strategies in which this model education kit is a primary tool. This session will describe the kit's development, and use throughout the U.S. and abroad. By increasing vWD awareness, screening, and referral, the health status of the 1 - 2 million affected American females will improve.

Learning Objectives: At the end of the session, participants will be able to: 1. Identify the four most common symptoms of vWD in females 2. State three benefits of the value of a consumer education kit as part of a national vWD awareness plan 3. Describe the goal and target audiences of the national plan for vWD and women in the areas of public awareness, education and policy changes

Keywords: Women's Health, Health Education Strategies

Presenting author's disclosure statement:
Organization/institution whose products or services will be discussed: National Hemophilia Foundation
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.

The 128th Annual Meeting of APHA