Managing women-specific bleeding in inherited bleeding disorders: A multidisciplinary approach
Mauser-Bunschoten, Eveline P.; Kadir, Rezan A.; Laan, Ellen T.M.; Elfvinge, Petra; Haverman, Lotte; Teela, Lorynn; Degenaar, Manon E.L.; Fransen van de Putte, Dietje E.; D'Oiron, Roseline; van Galen, Karin P.M.
(2021) Haemophilia, volume 27, issue 3, pp. 463 - 469
(Article)
Abstract
Introduction: Multidisciplinary management of women-specific bleeding is important to preserve quality of life, healthy reproduction and social participation of women and girls with bleeding disorders (WBD). Aim: To support appropriate multidisciplinary care for WBD in haemophilia treatment centres. Methods: Two case examples are presented and management issues discussed from different
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health care perspectives, including the nurse, patient, psychologist, gynaecologist, geneticist, psychosexual therapist and haematologist. Results: Woman with bleeding disorders may experience heavy menstruation from menarche onwards. This has a physical and psychosocial impact requiring a multidisciplinary approach. If a woman with an inherited bleeding disorder desires to become pregnant, preconception counselling is essential, to discuss genetic diagnosis, state of the art treatment options for the bleeding disorder in question and possible choices to prevent having an affected child, as well as maternal bleeding risks during conception, delivery and the post-partum period. Conclusion: Adequate management and good education of WBD requires a patient-centred multidisciplinary approach with experienced specialists in a haemophilia treatment centre.
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Keywords: bleeding disorder, haemophilia, heavy menstrual bleeding, post-partum haemorrhage and reproduction, von willebrand disease, women, partum haemorrhage and reproduction, post‐, Genetics(clinical), Hematology
ISSN: 1351-8216
Publisher: Wiley-Blackwell
Note: Funding Information: This paper is based on a special multidisciplinary session organized by the Committee for Women and Bleeding Disorders of the European Association for Haemophilia and Allied Disorders (EAHAD) that took place 5-7 February 2020 in The Hague, The Netherlands. We would like to thank Lorynn Teela for her assistance in working out the psychologist's perspective and Dr. Ioannis Tsimpanakos Gynaecologist, Royal Free Hospital, London, UK for his valuable presentation during the multidisciplinary session. We also thank EAHAD for supporting the Women's committee in organizing this multidisciplinary session during the EAHAD conference 2020 and facilitating the work on this paper. Dr. van Galen has received unrestricted research grants from CSL Behring and Bayer in the past and speakers fee from Takeda. Dr. d'Oiron has served as a consultant for Baxalta/shire, Bayer, CSL Behring, LFB, NovoNordisk, Octapharma, Pfizer, Roche and Sobi, Spark and was invited speaker for Baxalta/shire, Bayer, CSL Behring, LFB, NovoNordisk, Octapharma, Pfizer, Roche and Sobi, Spark. Funding Information: This paper is based on a special multidisciplinary session organized by the Committee for Women and Bleeding Disorders of the European Association for Haemophilia and Allied Disorders (EAHAD) that took place 5‐7 February 2020 in The Hague, The Netherlands. We would like to thank Lorynn Teela for her assistance in working out the psychologist's perspective and Dr. Ioannis Tsimpanakos Gynaecologist, Royal Free Hospital, London, UK for his valuable presentation during the multidisciplinary session. We also thank EAHAD for supporting the Women's committee in organizing this multidisciplinary session during the EAHAD conference 2020 and facilitating the work on this paper. Dr. van Galen has received unrestricted research grants from CSL Behring and Bayer in the past and speakers fee from Takeda. Dr. d'Oiron has served as a consultant for Baxalta/shire, Bayer, CSL Behring, LFB, NovoNordisk, Octapharma, Pfizer, Roche and Sobi, Spark and was invited speaker for Baxalta/shire, Bayer, CSL Behring, LFB, NovoNordisk, Octapharma, Pfizer, Roche and Sobi, Spark. Publisher Copyright: © 2020 The Authors. Haemophilia published by John Wiley & Sons Ltd
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