Introduction and Objectives:
Up to an estimated 1% of women in the United States have a bleeding disorder, but many with symptoms go undiagnosed. The National Hemophilia Foundation (NHF) conducted a needs assessment of currently diagnosed women to understand their path to diagnosis to help inform creation of an awareness campaign called Better You Know.
Materials and Methods:
In 2015, NHF fielded a survey of diagnosed women, yielding 184 responses. Informed by the needs assessment and input from a working group of medical providers and consumers, NHF launched the Better You Know campaign in 2016, which includes a website with a validated screening tool, resources on where to find providers on the path to diagnosis and treatment, outreach videos, social media posts, promotional postcards, paid media articles, accredited medical provider webinars, and mini-grants to select chapters for local outreach.
Results:
NHF found that women finally sought care for their symptoms for the following reasons: significant bleeding incident (surgery, childbirth, etc.), symptoms got too bad, or a family member was diagnosed. Women reported seeing the following providers first on their path to diagnosis: 38% hematologist; 23% primary care physician, 16% OB/GYN, and 15% pediatrician. About 80% of women also reported going to other people they know with a bleeding disorder for information and support. This lead to the creation of betteryouknow.org and other related campaign elements. From launch in July 2016 through October 2017, the website drew 4107 sessions, with 413 completing the screening tool and 86% of those being at risk. There were 108 clinicians who received accreditation for the provider webinars. NHF has developed partnerships with feminine hygiene product companies to spread the word, and pushes out campaign messaging via social media, chapters and some paid media. Total audience (website visits, social media impressions, etc.) for the campaign to date is over 252,500,000.
Conclusions:
Undiagnosed women with bleeding disorders face true challenges due to their bleeding symptoms. NHF will continue to raise awareness with providers and women, utilizing findings for effective methods of communication and education, through the Better You Know campaign.