Background: Patients with an increased bleeding tendency without any abnormalities in laboratory hemostasis tests are classified as having a bleeding disorder of unknown cause (BDUC). The large majority of BDUC patients is female and the most common bleeding symptoms are mucocutaneous, including heavy menstrual bleeding (HMB). Data on HMB and its impact on different aspects of daily life, such as social and work-related activities, in BDUC patients is limited. The aim of this study was to investigate the prevalence of HMB and the HMB-related quality of life in women with BDUC in comparison with patients with known bleeding disorders (BD) and no bleeding disorder (NBD).
Methods: Clinical and laboratory data from a total of 195 female patients from the prospective predictors of bleeding Predictors of Bleeding Evaluation in Adult Hematologic Patients with Bleeding Tendencies cohort (ProBe-AHP study) were used to analyze the prevalence of HMB in patients with an increased bleeding tendency. HMB was defined as a score of ≥1 on the HMB symptoms scoring scale of the International Society of Thrombosis and Hemostasis bleeding assessment tool (ISTH-BAT). Additionally, the Menorrhagia Multi-Attribute Scale (MMAS) was completed. The MMAS entails questions on six domains, including psychological wellbeing and physical health, and provides a score ranging from 0 to 100. Lower scores indicate a poorer HMB-related quality of life. Results from an MMAS population study from Peking was used as a reference group (general population).
Results: From the 195 included patients, 68 were diagnosed with a BD, 81 were diagnosed with BDUC and 46 were classified as NBD. The prevalence of HMB was 69% in BD, 83% in BDUC and 41% in NBD, which was a statistically significant difference between the three groups (p<0.001). A total of 53 MMAS questionnaires were completed and returned (BD n=21, BDUC n=21 and NBD n=9). MMAS score was lowest in the BD group (median [IQR]: 44 [ 39-95]), followed by the BDUC group (median [IQR]: 69 [43-86]) and the NBD group (median [IQR]: 69 [ 33-74]). Compared to data from the general population (mean ± SD: 95 ± 10), MMAS score was significantly lower in BDUC patients and BD patients.
Conclusion: HMB is a highly prevalent symptom in women with BD and with BDUC. Menstruation related quality of life was impaired in BDUC patients and even more in BD patients compared to the general population.
Moenen:Bayer: Research Funding; Octapharma: Research Funding.
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