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    Poster Networking

    Hemophilia and Rare Bleeding Disorders

    Poster Networking Session

    PB0205 - High prevalence of heavy menstrual bleeding in women with rare bleeding disorders in the Netherlands: retrospective data from the RBiN study

    Sunday, June 25, 2023
    18:30 – 19:30 ET
    Room: Exhibition

      Presenting Author(s)

    • Dominique P.M.S.M Maas, MD

      Resident internal medicine and PhD student
      Department of Hematology, Radboud university medical center, Nijmegen, The Netherlands. Hemophilia Treatment Center Nijmegen – Eindhoven – Maastricht, The Netherlands
      Nijmegen, Gelderland, Netherlands

      • Co-Author(s)

    • JS

      Joline L. Saes

      Resident internal medicine - hematology
      Department of Hematology, Radboud university medical center, Nijmegen, The Netherlands. Hemophilia Treatment Center Nijmegen – Eindhoven – Maastricht, The Netherlands
      Nijmegen, Gelderland, Netherlands

    • NB

      Nicole M.A. Blijlevens

      Internist-hematologist, Professor
      Department of Hematology, Radboud university medical center, Nijmegen, the Netherlands
      Nijmegen, Gelderland, Netherlands

    • MC

      Marjon H. Cnossen

      Associate professor, pediatric hematologist, MD, PhD
      Department of Pediatric Hematology, Erasmus MC – Sophia Children’s Hospital, University Medical Center Rotterdam, Rotterdam, The Netherlands
      Rotterdam, Zuid-Holland, Netherlands

    • Pd

      Paul L. den Exter

      Internist - vascular medicine specialist
      Department of Thrombosis and Hemostasis, Leiden University Medical Center, Leiden, The Netherlands
      Leiden, Zuid-Holland, Netherlands

    • Ov

      Olivier W.H. van der Heijden

      Gynecologist
      Department of Obstetrics and Gynecology, Radboud university medical center, Nijmegen, The Netherlands
      Nijmegen, Gelderland, Netherlands

    • IK

      Ilmar C. Kruis

      Representative
      Netherlands Hemophilia Society, Nijkerk, The Netherlands
      Nijkerk, Gelderland, Netherlands

    • Karina Meijer, MD, PhD (she/her/hers)

      MD, PhD, Internist-haematologist, Professor
      Department of Hematology, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands
      Groningen, Groningen, Netherlands

    • MP

      Marjolein Peters

      Pediatric hematologist
      Department of Pediatric Hematology, Amsterdam University Medical Centers, location Emma Children’s Hospital, Amsterdam, The Netherlands
      Amsterdam, Noord-Holland, Netherlands

    • Roger E.G Schutgens, MD, PhD, MSc (he/him/his)

      Internist-hematologist, Professor
      Center for Benign Hematology, Thrombosis and Hemostasis, Van Creveldkliniek, University Medical Center Utrecht and University Utrecht, Utrecht, The Netherlands
      Utrecht, Utrecht, Netherlands

    • Wv

      Waander L. van Heerde

      Biochemist, Coagulation Physiologist, Chief Scientific Officer Enzyre BV
      Department of Hematology, Radboud university medical center, Nijmegen, The Netherlands. Hemophilia Treatment Center Nijmegen – Eindhoven – Maastricht, The Netherlands. Enzyre BV, Novio Tech Campus, Nijmegen, The Netherlands.
      Nijmegen, Gelderland, Netherlands

    • LN

      Laurens Nieuwenhuizen

      Internist-hematologist
      Hemophilia Treatment Center Nijmegen – Eindhoven – Maastricht, The Netherlands. Department of Hematology, Maxima Medical Center, Eindhoven, The Netherlands.
      Eindhoven, Noord-Brabant, Netherlands

    • SS

      Saskia E.M. Schols

      Internist-hematologist
      Department of Hematology, Radboud university medical center, Nijmegen, The Netherlands. Hemophilia Treatment Center Nijmegen – Eindhoven – Maastricht, The Netherlands
      Nijmegen, Gelderland, Netherlands

    Background: Heavy menstrual bleeding (HMB) is associated with a reduced quality of life and limitations in social and physical functioning. Data on HMB in women with rare bleeding disorders (RBDs), including coagulation factor deficiencies and fibrinolytic disorders, are scarce.

    Aims: Analyze the prevalence, severity, and treatment of HMB in Dutch women with an RBD.

    Methods: The Rare Bleeding Disorders in the Netherlands (RBiN) study included 263 patients with an RBD from all six hemophilia treatment centers. Patients were included from October 2017 to November 2019. The study was approved by the Medical Research Ethics Committee Oost-Nederland. All patients gave informed consent. In this analysis, data of 111 women aged ≥16 years were studied. According to the ISTH BAT, HMB symptoms were scored from 0 (no/trivial) to 4 (severe symptoms requiring medical intervention). HMB was defined as a score ≥1. Age at RBD diagnosis was extracted from patient files.

    Results: HMB was reported by 89/111 women (80%) and was more prevalent in women with a fibrinolytic disorder (33/35; 94%) than in women with a coagulation factor deficiency (56/76; 74%) (p=0.011, Figure 1). Of the 89 women with HMB, 73 ever required treatment (82%). Multiple treatment modalities were frequently used, both in severe and mild deficiencies. Hormonal treatment was mostly used (n=64; 88%), while antifibrinolytics were prescribed less frequently (n=18; 25%). HMB was present since menarche in the majority of women with HMB (n = 61; 69%). In these women, median age at RBD diagnosis was 28 years (IQR 14-41) (Figure 2).

    Conclusion(s): HMB is common in women with rare coagulation factor deficiencies and fibrinolytic disorders. Women with mild deficiencies also frequently reported HMB. Only a minority of women were treated with hemostatic agents. In women with HMB since menarche, a significant delay in RBD diagnosis was observed with a median age at diagnosis of 28 years.