Clinical management of woman with bleeding disorders: A survey among European haemophilia treatment centres
Language English Country Great Britain, England Media print-electronic
Document type Journal Article
Grant support
European Association for Haemophilia and Allied Disorders
PubMed
32459044
PubMed Central
PMC7497252
DOI
10.1111/hae.14043
Knihovny.cz E-resources
- Keywords
- bleeding disorder, haemophilia, heavy menstrual bleeding, postpartum haemorrhage and reproduction, survey, von Willebrand disease,
- MeSH
- Algorithms MeSH
- Amniocentesis statistics & numerical data MeSH
- Pregnancy Complications, Hematologic epidemiology MeSH
- Hemophilia A * complications diagnosis drug therapy MeSH
- Blood Coagulation Disorders * complications diagnosis drug therapy epidemiology MeSH
- Humans MeSH
- Postpartum Hemorrhage epidemiology etiology MeSH
- Counseling MeSH
- Preimplantation Diagnosis statistics & numerical data MeSH
- Prenatal Diagnosis standards MeSH
- Surveys and Questionnaires MeSH
- Menorrhagia * diagnosis etiology therapy MeSH
- Pregnancy MeSH
- Pregnancy Trimester, Third MeSH
- von Willebrand Diseases * complications diagnosis drug therapy MeSH
- Health Knowledge, Attitudes, Practice MeSH
- Check Tag
- Humans MeSH
- Pregnancy MeSH
- Female MeSH
- Publication type
- Journal Article MeSH
- Geographicals
- Europe epidemiology MeSH
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.
Department of Gynaecology University Hospital Brno Brno Czech Republic
Department of Haematology Beaumont Hospital Beaumont Dublin Ireland
Department of Haematology Karolinska University Stockholm Sweden
Department of Haematology University Hospital Hradec Králové Czech Republic
European Haemophilia Consortium Brussels Belgium
Inserm U 1176 APHP Paris Saclay Hôpital Bicêtre Le Kremlin Bicêtre France
Van Creveldkliniek University Medical Center Utrecht University Utrecht Utrecht The Netherlands
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Noone D, Skouw‐Rasmussen N, Lavin M, et al. Barriers and challenges faced by women with congenital bleeding disorders in Europe: results of a patient survey conducted by the European Haemophilia Consortium. Haemophilia. 2019;25:468‐474. PubMed
Lee CA, Chi C, Pavord SR, et al. The obstetric and gynaecological management of women with inherited bleeding disorders‐review with guidelines produced by a taskforce of UK Haemophilia Centre Doctors' Organization. Haemophilia. 2006;12:301‐336. PubMed
Lavery S. Preimplantation genetic diagnosis of haemophilia. Br J Haematol. 2009;144:303‐307. PubMed
Punt MC, Waning ML, Mauser‐Bunschoten EP, et al. Maternal and neonatal bleeding complications in relation to peripartum management in women with Von Willebrand disease: a systematic review. Blood Rev. 2019;39:100633. PubMed
Zwagemaker A, Gouw SC, Valk C, et al. Postpartum haemorrhage in an unselected cohort of carriers of haemophilia. Haemophilia. 2018;24:e256‐e259. PubMed
Chi C, Lee C, Shiltagh N, et al. Pregnancy in carriers of haemophilia. Haemophilia. 2008;14:56‐64. PubMed
Kadir R, Sabin C, Goldman E, et al. Reproductive choices of women in families with haemophilia. Haemophilia. 2000;6:33‐40. PubMed
Lewis C, Hill M, Skirton H, et al. Non‐invasive prenatal diagnosis for fetal sex determination: Benefits and disadvantages from the service users perspective. Eur J Hum Genet. 2012;20:1127‐1133. PubMed PMC
Boardman FK, Hale R, Gohel R, et al. Preventing lives affected by hemophilia: a mixed methods study of the views of adults with hemophilia and their families toward genetic screening. Mol Genet Genomic Med. 2019;7:1‐19. PubMed PMC
Thomas S, Herbert D, Street A, et al. Attitudes towards and beliefs about genetic testing in the haemophilia community: a qualitative study. Haemophilia. 2007;13:633‐641. PubMed
Zia A, Stanek J, Christian‐Rancy M, et al. Utility of a screening tool for haemostatic defects in a multicentre cohort of adolescents with heavy menstrual bleeding. Haemophilia. 2018;24:957‐963. PubMed PMC
Lavin M, Aguila S, Dalton N, et al. Significant gynecological bleeding in women with low von Willebrand factor levels. Blood Adv. 2018;2:1784‐1791. PubMed PMC
Lee CA, Chi C, Shiltagh N, et al. Review of a multidisciplinary clinic for women with inherited bleeding disorders. Haemophilia. 2009;15:359‐360. PubMed
