A persistent diagnostic gap: awareness and workup of bleeding disorders in heavy menstrual bleeding among Dutch gynecologists and hematologists

Background Heavy menstrual bleeding (HMB) is common in the general population, affecting at least one-quarter of women of reproductive age. A bleeding disorder has been reported as an underlying cause of HMB in 30% of hospital-seen cases suffering from HMB. Despite this, bleeding disorders appear to be substantially underdiagnosed in HMB. Our primary objective is to evaluate the awareness and diagnostic work up regarding bleeding disorders in patients with HMB among gynecologists and hematologists in the Netherlands. Methods An online questionnaire was conducted in 2023. The survey was distributed by email, with an anonymous link to 1508 gynecologists and 646 hematologists. Results Of the 2154 emails sent, 261 surveys were analyzed: 149 from gynecologists and 62 from hematologists representing a 10% response rate. Most gynecologists (89%) estimated the prevalence of bleeding disorders in HMB to be below 15%, with 40% under 5%. In comparison, the majority of hematologists (77%) placed their estimate between 5%-30%. Screening tools, including pre-visit questionnaires, anamnestic or laboratory evaluation, were not structurally used by gynecologists. Only 5% of gynecologists reported participating in multidisciplinary team meetings on bleeding disorders and HMB, compared to 34% of hematologists. Moreover, 94% of responding gynecologists reported seldom or never referring HMB patients to a hematologist. Conclusions This study highlights the underestimation of the prevalence of bleeding disorders among patients with HMB. Systematic screening for bleeding disorders in patients with HMB by gynecologists is largely lacking. These findings underscore the necessity of increasing awareness of bleeding disorders and to implement a structured diagnostic workup of HMB.