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Author Notes:

Ateefa Chaudhury, New Mexico Cancer Center, Albuquerque, New Mexico, USA. Email: ateefac@nmohc.com

This research was funded by Sanofi. Sanofi and Sobi reviewed and provided feedback on the manuscript. The authors had full editorial control of the manuscript and provided their final approval of all content. AC: consultancy or honoraria/advisory committees for Bayer, Bioverativ, a Sanofi company, and Genentech. Her prior institution, Center For Inherited Blood Disorders, has received funding for research carried out in this work. RS Jr.: participated in advisory boards for uniQure, Sanofi, Genentech/Roche, Grifols, Kedrion, Octapharma, Novo Nordisk, Pfizer, Takeda, BioMarin, Spark and Catalyst; investigator‐initiated studies funded by Genentech, Grifols and Octapharma. NJ: employee of and hold equity interest in Sanofi. JT and ET: employee of Sanofi. MOO and RK: nothing to disclose.

Subject:

Research Funding:

This chart review was sponsored by Sanofi (Waltham, MA, USA). Medical writing and editing support were provided by Ashleigh Pulkoski‐Gross, PhD, CMPP, and Jennifer Alexander, MSc, MBA, CMPP, of JK Associates Inc., part of Fishawack Health (Conshohocken, PA, USA), and were funded by Sanofi.

Keywords:

  • Science & Technology
  • Life Sciences & Biomedicine
  • Hematology
  • bleeding
  • carriers
  • factor IX
  • factor VIII
  • female
  • haemophilia
  • treatment
  • CARRIERS
  • CARE

Women and girls with haemophilia and bleeding tendencies: Outcomes related to menstruation, pregnancy, surgery and other bleeding episodes from a retrospective chart review

Tools:

Journal Title:

HAEMOPHILIA

Volume:

Volume 27, Number 2

Publisher:

, Pages 293-304

Type of Work:

Article | Final Publisher PDF

Abstract:

Introduction: Women or girls with haemophilia (WGH) represent a group of female symptomatic carriers who experience bleeding events more frequently than non-carriers. Bleeding events include spontaneous/traumatic bleeds and prolonged bleeding related to surgery, menstruation and pregnancy. Challenges for the treatment of WGH include lack of screening, diagnosis and treatment guidelines. Aim: Evaluate clinical characteristics, haemostasis management and clinical outcomes regarding menstruation, childbirth, dental procedures, surgeries and other bleeding events in WGH. Methods: A retrospective, non-interventional review of medical records from WGH among three haemophilia treatment centres (HTCs) was conducted in the United States (2012–2018). Patients with ≥2 visits to the HTC and who had undergone intervention for haemostasis management with the outcome documented were included. Descriptive statistics were used. Results: Of 47 women and girls included in the chart review (37 with factor VIII deficiency, 10 with factor IX deficiency), median age at diagnosis was 22.6 years. Approximately 79% (n = 37) were diagnosed with mild haemophilia. Events of interest were primarily managed by factor concentrates or antifibrinolytics. Most treatment approaches were successful across clinical scenarios, except for heavy menstrual bleeding being insufficiently controlled in 8 (57%) of the 14 patients who experienced it. Conclusions: Bleeding events in WGH, such as excessive and prolonged bleeding during menstruation, demonstrate a unique burden and require specific medical intervention. These results highlight the importance of assessing the need for haemostasis management in WGH and may contribute to future prospective study designs.

Copyright information:

© 2020 The Authors. Haemophilia published by John Wiley & Sons Ltd.

This is an Open Access work distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License (https://creativecommons.org/licenses/by-nc-nd/4.0/rdf).
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