Eveline P Mauser-Bunschoten1, Rezan A Kadir2, Ellen T M Laan3, Petra Elfvinge4, Lotte Haverman5, Lorynn Teela5, Manon E L Degenaar6, Dietje E Fransen van de Putte7, Roseline D'Oiron8, Karin P M van Galen1. 1. Van Creveldkliniek, University Medical Center Utrecht, Utrecht University, Utrecht, The Netherlands. 2. Katharine Dormandy Haemophilia and Thrombosis Unit, Department of Obstetrics and Gynaecology, Royal Free Foundation Hospital and Insitiute for Women's Health, University College London, London, UK. 3. Department of Sexology and Psychosomatic Gynaecology, Amsterdam University Medical Center, Amsterdam, The Netherlands. 4. Department of Haematology, Karolinska University, Stockholm, Sweden. 5. Department of Psychology, Emma Children's Hospital, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands. 6. Dutch Haemophilia Patient Society NVHP, Nijkerk, The Netherlands. 7. Department of Genetics, University Medical Center Utrecht, Utrecht University, Utrecht, The Netherlands. 8. APHP Paris Saclay, Hôpital Bicêtre, INSERM U 1176, Le Kremlin Bicêtre, France.
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 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.
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 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.