INTRODUCTION: The impact of bleeding for women with bleeding disorders (WBD) is of increasing focus and importance. Despite this, optimal management strategies are unclear and knowledge gaps persist. AIM: To examine practices and define research priorities on diagnosis and management of WBD in Europe. METHODS: An electronic survey on clinical management of WBD was sent to 136 European haemophilia treatment centres (HTCs), including open questions on knowledge gaps and research priorities. RESULTS: Fifty-nine HTCs from 12 Western (WE) and 13 Central/Eastern European (CEE) countries completed the survey. Less than half runs a joint clinic (24 HTCs, 42%). Most centres without a joint clinic have a named obstetrician (81%) and/or gynaecologist (75%) available for collaboration. Overall 18/54 (33%) European HTCs do not offer preimplantation genetic diagnosis. Third trimester amniocentesis to guide obstetric management is available 28/54 HTCs (52%), less frequent in CEE compared to WE countries (5/17 vs 23/37, P = .03). 53% of HTCs (28/53) reported that only 0%-25% of WBD seek medical advice for heavy menstrual bleeding (HMB). An algorithm managing acute HMB in WBD is lacking in 22/53 (42%) HTCs. The main reported knowledge and research gaps are lack of awareness & education on WBD among patients and caregivers, optimal diagnostic strategies and effective multidisciplinary management of pregnancy & HMB. CONCLUSION: Joint clinics, prenatal diagnostics and algorithms for managing acute HMB are lacking in many European HTCs. HMB may be an underestimated issue. This survey highlights the need to prioritize improvement of knowledge and patient care for WBD across Europe.

• MeSH
• algoritmy MeSH
• amniocentéza statistika a číselné údaje   MeSH
• hematologické komplikace těhotenství epidemiologie   MeSH
• hemofilie A komplikace   diagnóza   farmakoterapie   MeSH
• koagulopatie komplikace   diagnóza   farmakoterapie   epidemiologie   MeSH
• lidé MeSH
• poporodní krvácení epidemiologie   etiologie   MeSH
• poradenství MeSH
• preimplantační diagnóza statistika a číselné údaje   MeSH
• prenatální diagnóza normy   MeSH
• průzkumy a dotazníky MeSH
• silné menstruační krvácení diagnóza   etiologie   terapie   MeSH
• těhotenství MeSH
• třetí trimestr těhotenství MeSH
• von Willebrandova nemoc komplikace   diagnóza   farmakoterapie   MeSH
• zdraví - znalosti, postoje, praxe MeSH
• Check Tag
• lidé MeSH
• mužské pohlaví MeSH
• těhotenství MeSH
• ženské pohlaví MeSH
• Publikační typ
• časopisecké články MeSH
• Geografické názvy
• Evropa MeSH

• Publikační typ
• abstrakty MeSH