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@article{1738177,
author = {van Galen, KPM and Lavin, Michelle and SkouwandRasmussen, Naja and Ivanova, Eva and MauserandBunschoten, Eveline and Punt, Marieke and Gerychová, Romana and Elfvinge, Petra and D'Oiron, Roseline and AbdulandKadir, Rezan},
article_location = {Hoboken},
article_number = {4},
doi = {http://dx.doi.org/10.1111/hae.14043},
keywords = {bleeding disorder; haemophilia; heavy menstrual bleeding; postpartum haemorrhage and reproduction; survey; von Willebrand disease},
language = {eng},
issn = {1351-8216},
journal = {Haemophilia},
note = {Bez afiliace k MU.},
title = {Clinical management of woman with bleeding disorders: A survey among European haemophilia treatment centres},
url = {https://onlinelibrary.wiley.com/doi/full/10.1111/hae.14043},
volume = {26},
year = {2020}
}
TY - JOUR
ID - 1738177
AU - van Galen, KPM - Lavin, Michelle - Skouw-Rasmussen, Naja - Ivanova, Eva - Mauser-Bunschoten, Eveline - Punt, Marieke - Gerychová, Romana - Elfvinge, Petra - D'Oiron, Roseline - Abdul-Kadir, Rezan
PY - 2020
TI - Clinical management of woman with bleeding disorders: A survey among European haemophilia treatment centres
JF - Haemophilia
VL - 26
IS - 4
SP - 657-662
EP - 657-662
PB - Wiley-Blackwell
SN - 13518216
N1 - Bez afiliace k MU.
KW - bleeding disorder
KW - haemophilia
KW - heavy menstrual bleeding
KW - postpartum haemorrhage and reproduction
KW - survey
KW - von Willebrand disease
UR - https://onlinelibrary.wiley.com/doi/full/10.1111/hae.14043
N2 - 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.
ER -
VAN GALEN, KPM, Michelle LAVIN, Naja SKOUW-RASMUSSEN, Eva IVANOVA, Eveline MAUSER-BUNSCHOTEN, Marieke PUNT, Romana GERYCHOVÁ, Petra ELFVINGE, Roseline D'OIRON a Rezan ABDUL-KADIR. Clinical management of woman with bleeding disorders: A survey among European haemophilia treatment centres. \textit{Haemophilia}. Hoboken: Wiley-Blackwell, 2020, roč.~26, č.~4, s.~657-662. ISSN~1351-8216. Dostupné z: https://dx.doi.org/10.1111/hae.14043.
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