Let’s Talk Period: A knowledge translation tool for bleeding disorders
Katie Monteith, MSc Candidate, Translational Medicine
On March 27th, the Translational Medicine graduate program had the pleasure of hearing from Dr. Paula James, a clinician-scientist and world-renowned expert in inherited bleeding disorders from Queen’s University. Dr. James’ presentation focused on the problems facing women with bleeding disorders and the importance of knowledge translation to the general public.
Dr. James began by highlighting that menorrhagia, heavy menstrual bleeding, is a population health problem. She explained that 30% of women report heavy menstrual bleeding at one time during their reproductive years, half of whom objectively have menorrhagia; however, only 5-10% seek medical attention. In particular, for approximately 15% of women, the cause of their heavy menstrual bleeding is an inherited bleeding disorder1. Unfortunately, menorrhagia can negatively impact quality of life as women can be forced to miss school/work, can decide to have a hysterectomy, and can suffer from iron-deficient anemia2. These women suffer despite having a very treatable problem. What’s more, is that there can be a lag of up to 15 years from when women start having symptoms to when they receive a diagnosis.
In Canada, there are tens of thousands of people living with undiagnosed bleeding disorders3, the majority of whom Dr. James believes are women. She explained that the barriers to diagnosis are responsible for this high number, especially for women. The diagnosis requires difficult lab testing; however, the most significant barrier to diagnosis for women is a lack of understanding about what normal bleeding is and what abnormal bleeding is, especially with regards to menstrual and postpartum bleeding. Another barrier women face is the social stigma associated with menstrual and postpartum bleeding, such that women feel uncomfortable discussing these topics.
In the clinic, physicians use Bleeding Assessment Tools (BATs) to take a standardized bleeding history, objectively evaluate a patient’s symptoms, and prevent abnormal symptoms from being overlooked. In 2013, Dr. James and her team developed and validated the selfadministered BAT which, allows patients to complete the screening tool themselves in 5 to 10 minutes.
To reach the general public, make the self-BAT widely available, and see the full knowledge translation of this screening tool, Dr. James developed the Let’s Talk Period project. The Let’s Talk Period initiative uses a website (https://letstalkperiod.ca/) and social media platforms (Instagram and Facebook) to inform the public about bleeding disorders and potentially bring awareness to people who have an undiagnosed bleeding disorder through completion of the self-BAT. In order to build the Let’s Talk Period project’s online presence, Dr. James consulted with social media, knowledge translation, and legal experts, as well as used focus groups to garner feedback. Overall, the Let’s Talk Period brand is inclusive and has a clear voice, is freely available, ensures anonymity, and has continued to grow.
Dr. James shared that since the launch in May 2016, the website has been viewed over 150 000 times in almost 200 countries and over 17 000 self-BATs have been completed. Interestingly, she notes that 45% of those self-BATs have produced an abnormal bleeding score (BS). After completing the self-BAT, people are informed if their score is normal/abnormal and are provided with a summary of their result in an accessible format. If the results are abnormal, they are encouraged to visit their family doctor and bring a copy of their self-BAT summary. Amazingly, Dr. James shared that she saw her first patient in October of 2016 who had completed the self-BAT. Since then, 14 of 167 referrals to Dr. James have been people who visited the website and completed the self-BAT. The preliminary data has shown these patients have had a higher BS than other referrals and are more likely to require intervention. These patients have also been diagnosed with a bleeding disorder less often, however it is important to note that currently this is a small sample size. Also, it’s worth mentioning that Let’s Talk Period’s Facebook has amassed 4000 followers and reached over 775 000 people with its informative content.
Dr. James continues to look to the future with this successful initiative. She discussed
developing online accessible tool kits for primary care physicians, nurses, teachers, and parents, so a lack of resources will hopefully no longer be a barrier to diagnosis.
It was a pleasure to have Dr. James as the speaker for our program’s first online discussion over zoom. On behalf of my peers, I would like to extend special thanks to her for her time and sharing her expertise with us.
1. Knol, H. M. et al. The prevalence of underlying bleeding disorders in patients with heavy
menstrual bleeding with and without gynecologic abnormalities. in American Journal of
Obstetrics and Gynecology (2013). doi:10.1016/j.ajog.2013.05.059
2. De Wee, E. M. et al. Health-related quality of life among adult patients with moderate
and severe von Willebrand disease. J. Thromb. Haemost. (2010). doi:10.1111/j.1538-
3. Bowman, M., Hopman, W. M., Rapson, D., Lillicrap, D. & James, P. The prevalence of
symptomatic von Willebrand disease in primary care practice. J. Thromb. Haemost. 8,