Abstract
Background: Undiagnosed bleeding disorders can pose significant health risks, especially for women. As many as 1 in 1000 individuals have a bleeding disorder, many of whom are undiagnosed. Lack of understanding about the difference between normal and abnormal bleeding, particularly menstrual bleeding, is a barrier to diagnosis. Recently, a self-administered bleeding assessment tool (Self-BAT) was validated as a screening tool for von Willebrand disease (VWD).
Objective: Our objective was to increase awareness of undiagnosed bleeding disorders through the use of an informational website (http://letstalkperiod.ca) targeted at women in their reproductive years. Here we report the results from the first 10 weeks of this knowledge translation project.
Methods:The Let's Talk Period website was built in consultation with a medical communications company, with the aim of clearly presenting key messages around menstrual bleeding. Focus groups with young women were held to determine optimal communication strategies and an iterative process of expert review was undertaken prior to launch. Upon completion of the integrated Self-BAT application, the result of whether the bleeding score is normal or abnormal is displayed to the user, along with a recommendation to seek medical attention if the score is positive/abnormal (≥6 for adult females,≥4 for adult males, ≥3 for individuals < 18 years). Queen's University Legal Department provided advice regarding website disclaimers. Research Ethics Board approval was sought but deemed unnecessary, given that no identifiable information is collected. Website users must electronically indicate that they have read and understood a disclaimer about the use of the Self-BAT application before being granted access, and must enter their age and gender.
The website was promoted through an interview with the senior author that aired on Canadian national television in the context of a segment on VWD. Additional promotion occurred using social media such as Facebook and Twitter, as well as during local interviews at Queen's University and Kingston General Hospital. The social media networks of the Canadian Hemophilia Society, the World Federation of Hemophilia, the Foundation for Women and Girls with Blood Disorders were also engaged to promote the website.
Results: For the 10-week period beginning May 14, 2016 there were 4,907 page views and 3,001 sessions initiated by 2,597 individual users from 62 countries. The average session length was 1 minute and 12 seconds; 15 were longer than 30 minutes. The majority of sessions (60%) were initiated in Canada. Table 1 outlines the countries with the highest volume of website visits.
A total of 460 individuals, 438 (95%) of whom were female, completed the online Self-BAT. Individuals ranged in age from 12 to 71 years (mean 36 years). Individuals aged 35 to 44 years represented the largest proportion of users who completed the Self-BAT (31%), followed by those aged 25 to 34 years (28%). The mean Self-BAT score was 6 and scores ranged from 0 to 44. Abnormal age and gender specific Self-BAT scores were reported in 45% of the respondents (n=209), of which 98% were female. Of the individuals with abnormal Self-BAT scores the most commonly reported symptoms (Table 2) were menorrhagia (99%), post-partum hemorrhage (84%), bleeding from the oral cavity (78%), cutaneous bleeding (74%) and epistaxis (56%). Frequency of specific symptoms of menorrhagia are outlined in Table 3. The most common symptom of post-partum hemorrhage reported was bleeding longer than 6 weeks after delivery (16%). Surgery or ICU admission post-partum was required in 3 women.
Conclusion: Initial results from the first 10 weeks of an informational website demonstrated that this platform is capable of reaching users from around the world. We have demonstrated that an online screening tool will be used by individuals concerned about abnormal bleeding. In women, the predominant symptoms of abnormal bleeding reported were menorrhagia and post-partum hemorrhage. In future, we plan to expand the educational content of the Let's Talk Period website, including information directed at medical professionals and a regular blog directed at the public. Additionally, we plan to seek research ethics approval for knowledge translation research tracking the outcomes of abnormal bleeding scores in local website users.
James:Bayer: Research Funding; CSL Behring: Research Funding; Octapharma: Research Funding; Biogen: Consultancy; Basalt: Consultancy.
