Despite a relatively strong link between hemostatic defects and heavy menstrual bleeding (HMB), underlying bleeding disorders in this age group remain undiagnosed. This is especially the case when HMB is experienced soon after menarche. Overall, up to 20% of women with HMB have an underlying bleeding disorder. The SSC Subcommittee on Women’s Health Issues in Thrombosis and Haemostasis is opening a new project designed to prospectively study the prevalence of bleeding disorders and to create better evidence for the diagnostic approach and management and address these critical issues faced by adolescent girls with HMB.
The frequency of undiagnosed bleeding disorders in young adolescents has only been studied in a few retrospective studies. The prevalence of bleeding disorders with anovulatory bleeding in young women is not known. HMB in young girls carries high morbidity, including medical complications, school and work absenteeism, decreased quality of life, psychological disruption and increased health care costs.
The project will utilize a comprehensive approach to diagnosis and management of young women with HMB. This project will incorporate tools such as pictorial blood assessment chart, ISTH bleeding assessment chart and a laboratory-testing algorithm including thromboelastography. Details on quality of life (QOL) will be captured by formal fatigue and QOL surveys at various time points. The overall aim to create better evidence of ISTH members and Haemostasis Thrombosis specialists are invited to participate in the study. We acknowledge that there will be variations in laboratory testing and clinical management but interested investigators can contact the PI, Ayesha Zia, MD directly at Ayesha.firstname.lastname@example.org to find out about the minimum criteria required to participate.