Women prefer proactive support from providers for treatment of heavy menstrual bleeding: A qualitative study in adult women with moderate or severe Von Willebrand disease

Eising, Heleen P.; Sanders, Yvonne V.; Meris, Joke de; Leebeek, Frank W.G.; Meijer, Karina

doi:10.1111/hae.13552

Cited by 10 publications

(22 citation statements)

References 20 publications

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“…Poorly controlled HMB may also influence the decision to undergo early hysterectomy, prematurely limiting reproductive choices. A recent study highlighted the value placed by WBD in proactive engagement from healthcare providers in the treatment of HMB . This is reiterated in our survey which highlights the negative impact of CBD on reproductive choices, underscoring the necessity of education and counselling by experienced health care workers and support networks for WBD, to improve prenatal support.…”

Section: Discussionsupporting

confidence: 62%

“…This may be due to more severe CBD cases known and treated at HTC but demonstrates the obvious benefits for WBD who are treated through a HTC compared to a general hospital‐based service. Hence, it is vital that NMOs and HTCs consider how to actively engage with WBD to provide the much needed multidisciplinary support proactively …”

Section: Discussionmentioning

confidence: 99%

“…Hence, it is vital that NMOs and HTCs consider how to actively engage with WBD to provide the much needed multidisciplinary support proactively. [12][13][14]…”

Section: Discussionmentioning

confidence: 99%

See 2 more Smart Citations

Barriers and challenges faced by women with congenital bleeding disorders in Europe: Results of a patient survey conducted by the European Haemophilia Consortium

Noone¹,

Skouw-Rasmussen²,

Lavin

et al. 2019

Haemophilia

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Introduction Historically, issues faced by women with bleeding disorders (WBD) have been underestimated. While advances in genetic testing have resulted in improvements, significant challenges remain in the initial recognition of abnormal bleeding and referral of WBD. Methods The European Haemophilia Consortium (EHC) developed a questionnaire for WBD to provide insights into the barriers and challenges faced by WBD in Europe. Results In total, 709 WBD responded to the survey from 32 countries, predominantly from western European countries (94%). A delay in ascertaining the diagnosis of a congenital bleeding disorders (CBD) remains, with a median age at diagnosis of 16 years. The presence of family history is strongly associated with a lower median age at diagnosis of 6 years. WBD reported significant disease impact on their day‐to‐day life, most evident for the rarer CBD. The bleeding symptom of biggest impact on daily life is heavy menstrual bleeding (HMB), reported by 55% of women. Importantly, 25% of WBD reports that their condition severely impacted their decision to have or has prevented them from having children. Respondents registered with Haemophilia Treatment Centres (HTC) are 2.2 times more likely to receive treatment compared to WBD in other hospital services. Conclusion Improved education for both patients and healthcare providers is essential to improve time to diagnosis, access to treatment and psychosocial supports for WBD in Europe.

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Section: Discussionsupporting

confidence: 62%

Section: Discussionmentioning

confidence: 99%

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Barriers and challenges faced by women with congenital bleeding disorders in Europe: Results of a patient survey conducted by the European Haemophilia Consortium

Noone¹,

Skouw-Rasmussen²,

Lavin

et al. 2019

Haemophilia

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“…Our finding that women with endometriosis were even less likely to be screened highlights the need to increase awareness that a bleeding disorder may be a contributing factor to HMB, even in the presence of gynaecologic disease . This study brings to light the need for the haematology community to improve education and awareness among women's health providers in order to identify females with bleeding disorders and allow for optimal medical management of HMB prior to surgical consideration, inform decision‐making when considering surgery, and to optimize haemostasis for those who require surgery …”

Section: Discussionmentioning

confidence: 90%

Von Willebrand disease screening in women undergoing hysterectomy for heavy menstrual bleeding

et al. 2019

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“…Their supportive health care staff can enable otherwise reluctant women to discuss their social, psychosocial, and stress experiences. 22,23 Our patient should receive comprehensive care at an HTC, including assessment by quality-oflife and psychosocial tools, counseling, and follow-up with psychosocial and hemostasis professionals, to optimize her quality of life.…”

Section: The Hematologist's Viewmentioning

confidence: 99%

Case-based discussion on the implications of exogenous estrogens in hemostasis and thrombosis: the hematologist’s view

Ragni

2019

Hematology

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In the childbearing years, hormonal therapy or hormonal changes in the menstrual cycle or the puerperium may be complicated by bleeding or thrombosis; however, among women with congenital disorders of hemostasis and thrombosis, the risk of bleeding or thrombosis may be increased. In women with congenital bleeding disorders, heavy menstrual bleeding is the most common bleeding symptom, and postpartum hemorrhage occurs despite treatment. Given the limitations of current therapy and the associated medical and psychological burden in women with bleeding disorders, better treatment approaches are needed to improve health outcomes and quality of life. In women with congenital thrombotic disorders, thromboembolism may complicate exogenous hormonal therapy and endogenous hormonal change during pregnancy and procedures, but risk differs by type of thrombophilia, procedure, time at risk, and thrombosis risk factors, all of which affect management. In this article, I shall consider a case-based discussion of current issues in women with congenital bleeding and clotting disorders, including heavy menstrual bleeding in a woman with VWD, postpartum hemorrhage risk in VWD, and thrombosis risk with oocyte retrieval in a woman with factor V Leiden and past thromboembolism. The goals are to review bleeding or thrombosis risk in these cases, current data, limitations of current treatment guidelines, and areas for future study.

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Women prefer proactive support from providers for treatment of heavy menstrual bleeding: A qualitative study in adult women with moderate or severe Von Willebrand disease

Cited by 10 publications

References 20 publications

Barriers and challenges faced by women with congenital bleeding disorders in Europe: Results of a patient survey conducted by the European Haemophilia Consortium

Barriers and challenges faced by women with congenital bleeding disorders in Europe: Results of a patient survey conducted by the European Haemophilia Consortium

Von Willebrand disease screening in women undergoing hysterectomy for heavy menstrual bleeding

Case-based discussion on the implications of exogenous estrogens in hemostasis and thrombosis: the hematologist’s view

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