Approximately 1% or as many as 2 million women in the United States may have an undiagnosed bleeding disorder; most disorders remain undiagnosed for years, and many are never diagnosed despite these women experiencing serious gynecologic and obstetric and other challenges related to bleeding throughout their lives. There
HEALTH EDUCATION: WOMEN WITH BLEEDING DISORDERS
WHAT WE LEARNED AND HOW
HFA developed a survey and collected information in 2017 from women over the age of 18 with hemophilia A, hemophilia B, von Willebrand鈥檚 Disease, other factor deficiencies, or platelet disorder who were participants in the Blood Sisterhood and Families programs. These surveys identified their knowledge and experience regarding female bleeding disorders.
Only women with reported blood disorder diagnoses or symptoms of a blood disorder (including women who are carriers of bleeding disorders) were included in analysis. There was a total of 86 responses that met inclusion criteria.
- 81% of women with a bleeding disorder diagnosis see a healthcare provider for their bleeding disorders
- 91% of all women indicated that they experience joint problems and 40% said they were having joint problems on the day they were taking the survey; older women tended to experience joint problems more frequently than younger women
- Women indicated having poor physical health for an average of 8 of the last 30 days
- Women indicated having poor mental health for an average of 9 of the last 30 days
- Additional education is needed on:
- Female symptoms of bleeding disorders, as only 62% of women correctly identified all symptoms; women aged 18-29 were more likely to answer incorrectly than older age groups
- The purpose of bleeding disorder-related tests, as only 33% of the women without a bleeding disorder diagnosis and 62% of the women with a diagnosis knew what a Factor VIII Clotting test is used for
- Patient-provider relationships should continue to be established and broadened for women with bleeding disorders, as:
- 23% of women with a diagnosed bleeding disorder聽 do not have a prescribed treatment plan in place
- only 42% of undiagnosed women discussed a diagnostic test at their last provider visit and only 17% of undiagnosed women received a diagnostic test at their last provider visit
For a detailed summary of the findings of the 2017 survey click below
A link to the 2017 survey summary report is coming soon!
What we have heard from the women in our community.
Based on the findings from the 2017 survey, HFA held discussion groups to better understand barriers and potential gaps in care for women with diagnosed bleeding disorders. HFA held three discussion groups with a total of 23 women, aged 18 years and older, with a diagnosed bleeding disorder, who were members of HFA鈥檚 Blood Sisterhood or Moms in Action programs. Some of the most significant findings included:
We listened to the needs of women in the community, and at their recommendation and encouragement we have created an online course in HFA鈥檚 Learning Central for women and providers to learn more about the manifestations of and care for women with bleeding disorders.
HOW WE PROMOTE WOMEN鈥橲 HEALTH AWARENESS 聽
Learning Central Women’s Health Courses
To help the bleeding disorders community learn more about women with bleeding disorders and have access to the educational tools they need to stay informed, HFA developed an interactive courses in Learning Central. The women with bleeding disorders courses include topics on; the signs and symptoms, testing and diagnosis, treatments that are available to women, and tools and resources for women to advocate for their healthcare needs.
HFA has collaborated with providers who treat women with bleeding disorders, to ensure that the Bleeding Disorders in Women, e-learning platform, provides accurate information for the community to learn something new or gain the information to educate others about bleeding disorders.
The women’s health courses can be found in the Knowledge Park at www.hfalearning.org.
In collaboration with the Centers for Disease Control and Prevention (CDC), Hemophilia Federation of America (HFA) has been working to increase the knowledge and awareness of the signs and symptoms, available testing, diagnosis, and treatment of bleeding disorders in women.