As many as 2 million American women have bleeding disorders and do not know it, according to the Office on Women’s Health of the US Department of Health and Human Services. Many women with bleeding disorders only learn of their diagnoses after complications from childbirth, injury or surgery. However, the National Hemophilia Foundation (NHF) has long worked toward earlier diagnoses to help young women achieve better future outcomes.
“It would be good for any providers who come into contact with young women to understand the symptoms of bleeding disorders,” says Patrice Thomas, MS, MSW, former manager of education at NHF. She was the organizer for the NHF-Centers for Disease Control and Prevention (CDC) College Health Project. She now serves as program services director at the Hemophilia Foundation of Michigan in Ypsilanti. “There are ways to train these doctors to diagnose young women, especially before they start having children,” says Thomas.
Through this collaborative project, NHF educated healthcare providers at several college campus health clinics. The focus was on preparing providers to recognize the symptoms of bleeding disorders in young women and refer them to hemophilia treatment centers (HTCs) for timely, accurate diagnosis.
Reaching young women
In a 2010 NHF survey of 1,243 women ages 18 to 24 across the country, researchers asked where they would seek care if they thought they had symptoms of a bleeding disorder. Approximately 20% said they would seek care at a college health clinic. Further, of the 2% of respondents who had been diagnosed with a bleeding disorder, 24% had received care at a college health clinic.
Based on those results, NHF organizers targeted their efforts accordingly. ”Young women with symptoms often turn to their college health clinics for help, so that seemed a good place to start,” says Thomas.
The NHF-CDC College Health Project targeted women’s health clinics on four college campuses: Florida International University (FIU) and University of Miami (UM), both in Miami; Michigan State University (MSU) in East Lansing; and University of Pennsylvania in Philadelphia. HTC staff facilitated training for providers at each college health site. The training included the basics of bleeding disorders, challenges faced by women with bleeding disorders and assessing women with specific symptoms of a bleeding disorder. NHF provided pretests and posttests that measured changes in the college health providers’ knowledge. After the educational training sessions, personnel at the college health sites were asked if they had adopted any new policies for screening women for bleeding disorders. They were also asked if they had witnessed an increase in identified women who had then been referred to the HTC near campus for further testing.
One of the most important results of the project was simply building connections between the college health clinics and the HTCs nearby. “Many HTCs are located on or near college campuses. But this type of education and interaction with college health services had not been done before on the campuses we contacted,” says Patti Rhynders, PhD, MPH, MCHES. She is a consultant who served as a liaison between NHF and the college health centers. “College healthcare providers are eager to be involved, to increase their knowledge of women’s bleeding disorders so they will be able to identify and screen at-risk women,” she adds.
Working with college health centers, Rhynders and other organizers learned that most of the healthcare providers had limited awareness of educational resources about women’s bleeding disorders. In addition, few of them specialize in women’s health. As a result, NHF chapters, HTCs and local college health services have an opportunity to work together to raise awareness among college women and the healthcare professionals who care for them, Rhynders says.
Many of the successes of the program were anecdotal, Thomas says. For instance, the MSU health clinic reported that staff referred a number of women to the local HTC.
NHF continues to prioritize early diagnosis for women with bleeding disorders, says Kate Nammacher, MPH, NHF’s director of education. Through a renewed partnership agreement with the CDC, NHF will target women ages 18 to 25 with an educational web portal about bleeding disorders. “We plan to focus on finding and developing partnerships with colleges, universities and other organizations to address the issue of bleeding disorders among young women,” Nammacher says.