Clinical management of woman with bleeding disorders: A survey among European haemophilia treatment centres.
Algorithms
Amniocentesis
/ statistics & numerical data
Blood Coagulation Disorders
/ complications
Counseling
Europe
/ epidemiology
Female
Health Knowledge, Attitudes, Practice
Hemophilia A
/ complications
Humans
Male
Menorrhagia
/ diagnosis
Postpartum Hemorrhage
/ epidemiology
Pregnancy
Pregnancy Complications, Hematologic
/ epidemiology
Pregnancy Trimester, Third
Preimplantation Diagnosis
/ statistics & numerical data
Prenatal Diagnosis
/ standards
Surveys and Questionnaires
von Willebrand Diseases
/ complications
bleeding disorder
haemophilia
heavy menstrual bleeding
postpartum haemorrhage and reproduction
survey
von Willebrand disease
Journal
Haemophilia : the official journal of the World Federation of Hemophilia
ISSN: 1365-2516
Titre abrégé: Haemophilia
Pays: England
ID NLM: 9442916
Informations de publication
Date de publication:
Jul 2020
Jul 2020
Historique:
received:
31
03
2020
revised:
26
04
2020
accepted:
04
05
2020
pubmed:
28
5
2020
medline:
20
5
2021
entrez:
28
5
2020
Statut:
ppublish
Résumé
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. To examine practices and define research priorities on diagnosis and management of WBD in Europe. 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. 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. 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.
Identifiants
pubmed: 32459044
doi: 10.1111/hae.14043
pmc: PMC7497252
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
657-662Subventions
Organisme : European Association for Haemophilia and Allied Disorders
Informations de copyright
© 2020 The Authors. Haemophilia published by John Wiley & Sons Ltd.
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