Researcher launches website to help women detect the signs of a bleeding disorder
KGHRI clinician-scientist Paula James isn’t afraid to talk about periods, and she hopes others join the conversation in order to help women recognize if they have a bleeding disorder. The Let’s Talk Period website aims to increase awareness of the signs and symptoms of bleeding disorders. As many as 35,000 Canadians may be suffering from a bleeding disorder, but many of those don’t know it because they assume their bleeding is normal and don’t seek help.
“There is a lack of good information and a lot of misinformation out there,” says Dr. James, a Professor in the Department of Medicine at Queen’s University. “Women have felt frustrated for years, which is why I launched this website. Bleeding disorders are inherited so for many women, their mom could have had one too. But we just didn’t talk about periods – the problem is that many women think heavy periods are normal.”
Dr. James, also a hematologist at Kingston General Hospital and Hotel Dieu Hospital, and her team have developed a self-administered bleeding assessment tool (Self-BAT) modelled after a BAT developed in Italy in 2005. This test was administered by an expert when people visited their doctor, but many
doctors were not spending the 20 to 40 minutes needed to complete the test correctly due to time pressures in the office.
“I decided to create a Self-BAT that women could fill out themselves,” says Dr. James, adding that the Self-BAT has been clinically validated through studies and research. “About 30 per cent of women have a problem with heavy periods at some point during their reproductive years, but most figure that’s normal. It isn’t. We know that up to 15 per cent of women with heavy periods have an underlying bleeding disorder. For the other 85 per cent the causes include uterine fibroids for example, or a hormonal problem. Regardless of the cause, the good thing is, effective treatments are available - women just need to be made aware there is a problem.”
While creating the site, Dr. James was advised to make the survey anonymous to encourage more people to fill it out. She is hoping women will take the survey to their family doctors if they have any concerns. The next step is to add information about referral centres where women can take their results and also provide additional information for physicians.
“I really want to have a follow-up study to make sure these women are getting the treatment they need, based on their Self-BAT results,” says Dr. James. “We are still refining and enhancing the website to provide the best care possible.”
To date, the website has had 2,300 hits and 335 Self-BATs have been completed.