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Article ; Online: Challenges facing women and girls with bleeding disorders.

Doherty, Dearbhla / Lavin, Michelle

The Lancet. Haematology

2023 Volume 10, Issue 11, Page(s) e875–e876

MeSH term(s)	Female ; Humans ; Blood Coagulation Disorders ; Hemorrhagic Disorders/therapy
Language	English
Publishing date	2023-10-31
Publishing country	England
Document type	Journal Article
ISSN	2352-3026
ISSN (online)	2352-3026
DOI	10.1016/S2352-3026(23)00302-2
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Article ; Online: Diagnosis and treatment challenges in lower resource countries: State-of-the-art.

Mahlangu, Johnny / Diop, Saliou / Lavin, Michelle

Haemophilia : the official journal of the World Federation of Hemophilia

2024 Volume 30 Suppl 3, Page(s) 78–85

Abstract: The 2022 World Federation of Haemophilia Annual Global Survey (AGS) reports that 454,690 patients with inherited bleeding disorders (IBD) have been identified globally. While this represents noteworthy progress, haemophilia epidemiology data indicate ... ...

Abstract	The 2022 World Federation of Haemophilia Annual Global Survey (AGS) reports that 454,690 patients with inherited bleeding disorders (IBD) have been identified globally. While this represents noteworthy progress, haemophilia epidemiology data indicate that 75% of people with inherited bleeding disorders living in low-income and low-to-middle-income countries have yet to be diagnosed. The AGS also revealed that 11 billion clotting factor units are available to treat haemophilia A and B globally. Due to a lack of finance, these treatments are unavailable to haemophilia in low-income countries with a consequence lack of access equity for haemophilia treatment in these communities. This sobering reality is not limited to haemophilia but applies to von Willebrand Disease (VWD). While VWD is the most prevalent IBD, only 103,844 people living with this condition have been diagnosed globally. Of the diagnosed patients, only a fraction live in low- or middle-income countries. Moreover, the majority of VWD patients are still treated sub-optimally without replacement therapies or prophylaxis, both of which are now accepted as global standards of care. In this state-of-the-art review, the authors reflect on three issues. First, the minimum elements required to diagnose haemophilia in a resource-constrained setting are identified. Second, this review points to the critical stakeholders and outlines their roles in removing access to haemophilia treatment barriers. Finally, the authors examine von Willebrand disease's ongoing diagnostic and treatment challenges and compare these to haemophilia. With the rapidly evolving novel therapies, the therapeutic landscape of all IBD will likely change for the better.
MeSH term(s)	Humans ; Hemophilia A/diagnosis ; Hemophilia A/epidemiology ; Hemophilia A/therapy ; von Willebrand Diseases/diagnosis ; von Willebrand Diseases/epidemiology ; von Willebrand Diseases/therapy ; Blood Coagulation Factors/therapeutic use
Chemical Substances	Blood Coagulation Factors
Language	English
Publishing date	2024-03-10
Publishing country	England
Document type	Review ; Journal Article
ZDB-ID	1229713-6
ISSN	1365-2516 ; 1351-8216 ; 1355-0691
ISSN (online)	1365-2516
ISSN	1351-8216 ; 1355-0691
DOI	10.1111/hae.14956
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Article ; Online: Diagnostic pitfalls and conundrums in type 1 von Willebrand disease.

Sidonio, Robert F / Lavin, Michelle

Hematology. American Society of Hematology. Education Program

2022 Volume 2022, Issue 1, Page(s) 618–623

Abstract: Most people with von Willebrand disease (VWD) have a partial quantitative deficiency of plasma von Willebrand factor (VWF) or type 1 VWD. In contrast to type 2 and type 3 VWD, laboratory assays will not always establish the diagnosis in type 1 VWD. This ... ...

Abstract	Most people with von Willebrand disease (VWD) have a partial quantitative deficiency of plasma von Willebrand factor (VWF) or type 1 VWD. In contrast to type 2 and type 3 VWD, laboratory assays will not always establish the diagnosis in type 1 VWD. This is because plasma VWF levels in type 1 VWD, especially those with levels closer to 50 IU/dL, overlap with the general population. Assessment is further complicated by increased plasma VWF levels in response to physiologic stressors or aging. Diagnosis of those with type 1 VWD with plasma VWF levels 30 to 50 IU/dL (previously referred to as "low VWF") requires expert assessment of bleeding phenotype as well as an understanding of the limitations of both bleeding assessment tools (BATs) and laboratory testing. Using the available evidence and highlighting research gaps, we discuss common dilemmas facing providers relating to assessment of adolescents, transition from pediatrics to adult care, and older individuals with type 1 VWD.
Language	English
Publishing date	2022-12-09
Publishing country	United States
Document type	Journal Article
ZDB-ID	2084287-9
ISSN	1520-4383 ; 1520-4391
ISSN (online)	1520-4383
ISSN	1520-4391
DOI	10.1182/hematology.2022000389
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Article ; Online: Current Challenges in the Peripartum Management of Women with von Willebrand Disease.

Byrne, Bridgette / Ryan, Kevin / Lavin, Michelle

Seminars in thrombosis and hemostasis

2021 Volume 47, Issue 2, Page(s) 217–228

Abstract: For many women, pregnancy and childbirth represent their first major hemostatic challenges. Despite advancements in obstetric care, up to 2 to 5% of all deliveries are complicated by postpartum hemorrhage (PPH). To mitigate bleeding risk, physiological ... ...

Abstract	For many women, pregnancy and childbirth represent their first major hemostatic challenges. Despite advancements in obstetric care, up to 2 to 5% of all deliveries are complicated by postpartum hemorrhage (PPH). To mitigate bleeding risk, physiological changes occur in pregnancy, including increases in plasma von Willebrand factor (VWF) and factor VIII levels. For women with von Willebrand disease (VWD), these physiological alterations are blunted or absent. As a result, women with VWD have a heightened risk of PPH, both primary (in the first 24 hours) and secondary (>24 hours to 6 to 12 weeks postpartum). Pregnancy and delivery management for women with VWD should therefore be carefully coordinated as part of a multidisciplinary team approach. In the absence of large-scale clinical trials, the management of women with VWD during pregnancy is guided by expert consensus guidelines. Clinical practices internationally are not uniform, and areas of considerable clinical uncertainty exist. Traditional peripartum plasma VWF thresholds for hemostatic cover and therapeutic targets are currently under scrutiny, as PPH is not eliminated in women with VWD who receive replacement therapy. The benefit and optimal duration of postpartum tranexamic acid have yet to be defined, and standardized methods of quantification of blood loss at the time of delivery are currently lacking. In this article, we review the evidence base to date and explore the current clinical challenges in the management of pregnant women with VWD.
MeSH term(s)	Female ; Humans ; Pregnancy ; von Willebrand Diseases/therapy
Language	English
Publishing date	2021-02-26
Publishing country	United States
Document type	Journal Article ; Review
ZDB-ID	196901-8
ISSN	1098-9064 ; 0094-6176
ISSN (online)	1098-9064
ISSN	0094-6176
DOI	10.1055/s-0041-1723797
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Article ; Online: Corrigendum to Examining international practices in the management of pregnant women with von Willebrand disease [J Thromb Haemost. 2022 Jan;20(1):82-91].

Lavin, Michelle / Luceros, Analia Sánchez / Kouides, Peter / Abdul-Kadir, Rezan / O'Donnell, James S / Baker, Ross I / Othman, Maha / Haberichter, Sandra L

Journal of thrombosis and haemostasis : JTH

2023 Volume 21, Issue 4, Page(s) 1068

Language	English
Publishing date	2023-02-23
Publishing country	England
Document type	Published Erratum
ZDB-ID	2112661-6
ISSN	1538-7836 ; 1538-7933
ISSN (online)	1538-7836
ISSN	1538-7933
DOI	10.1016/j.jtha.2023.01.020
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Zs.A 5805: Show issues			Location: Je nach Verfügbarkeit (siehe Angabe bei Bestand) bis Jg. 1994: Bestellungen von Artikeln über das Online-Bestellformular Jg. 1995 - 2021: Lesesall (2.OG) ab Jg. 2022: Lesesaal (EG)
Zs.MO 295: Show issues

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Article ; Online: Reported prevalence of von Willebrand disease worldwide in relation to income classification.

Stonebraker, Jeffrey S / Iorio, Alfonso / Lavin, Michelle / Rezende, Suely M / Srivastava, Alok / Pierce, Glenn F / Coffin, Donna / Tootoonchian, Ellia / Makris, Michael

Haemophilia : the official journal of the World Federation of Hemophilia

2023 Volume 29, Issue 4, Page(s) 975–986

Abstract: Introduction: The diagnosis of von Willebrand disease (VWD) is complex and challenging, especially when diagnostic resources are limited. This results in a lack of consistency in identifying and reporting the number of people with VWD and variations in ... ...

Abstract	Introduction: The diagnosis of von Willebrand disease (VWD) is complex and challenging, especially when diagnostic resources are limited. This results in a lack of consistency in identifying and reporting the number of people with VWD and variations in the VWD prevalence worldwide. Aim: To analyze the reported prevalence of VWD worldwide in relation to income classification. Methods: Data on the VWD prevalence from the World Federation of Hemophilia Annual Global Survey, national registries of Australia, Canada, and the United Kingdom, and the literature were analysed. The income level of each country was classified according to the World Bank. Results: The mean VWD prevalence worldwide was 25.6 per million people. The VWD prevalence for high-income countries (HIC) of 60.3 per million people was significantly greater (p < .01) than upper middle (12.6), lower middle (2.5) and low (1.1) income countries. The type 3 VWD prevalence for HIC of 3.3 per million people was significantly greater (p < .01) than lower middle (1.3) and low income (0.7) countries. The reported VWD prevalence was greater among females than males. Conclusion: The reported VWD prevalence varied considerably across and within income classifications. The variability of type 3 VWD prevalence was less than the VWD prevalence (all types). The variability in detection and diagnosis of type 1 VWD presents a challenge in forming a consistent prevalence value across countries and income classifications.
MeSH term(s)	Male ; Female ; Humans ; von Willebrand Diseases/diagnosis ; von Willebrand Diseases/epidemiology ; von Willebrand Disease, Type 3 ; Prevalence ; Hemophilia A/epidemiology ; Australia/epidemiology ; von Willebrand Factor
Chemical Substances	von Willebrand Factor
Language	English
Publishing date	2023-06-05
Publishing country	England
Document type	Journal Article ; Review
ZDB-ID	1229713-6
ISSN	1365-2516 ; 1351-8216 ; 1355-0691
ISSN (online)	1365-2516
ISSN	1351-8216 ; 1355-0691
DOI	10.1111/hae.14810
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Zs.A 4249: Show issues			Location: Je nach Verfügbarkeit (siehe Angabe bei Bestand) bis Jg. 1994: Bestellungen von Artikeln über das Online-Bestellformular Jg. 1995 - 2021: Lesesall (2.OG) ab Jg. 2022: Lesesaal (EG)
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Article ; Online: An expert consensus to define how higher standards of equitable care for von Willebrand disease can be achieved in the UK and Republic of Ireland.

Laffan, Mike / Benson, Gary / Farrelly, Cathy / Gomez, Keith / Jones, April / Maclean, Rhona / O'Donnell, James / Lavin, Michelle

Haemophilia : the official journal of the World Federation of Hemophilia

2023 Volume 29, Issue 3, Page(s) 819–826

Abstract: Introduction: Von Willebrand Disease (VWD) is the most common inherited bleeding disorder. However, recognition of the disease by both the public and healthcare professionals lags behind that of other bleeding disorders, leading to delays in diagnosis ... ...

Abstract	Introduction: Von Willebrand Disease (VWD) is the most common inherited bleeding disorder. However, recognition of the disease by both the public and healthcare professionals lags behind that of other bleeding disorders, leading to delays in diagnosis and treatment for patients. Updated national guidelines are needed to highlight an appropriate pathway for managing VWD patients in a timelier manner. Aim: To identify ways in which care for VWD can be achieved on a more equitable basis. Methods: Using a modified Delphi approach, a panel of VWD experts developed 29 statements across five key themes. These were used to form an online survey that was distributed to healthcare professionals involved in VWD care across the UK and Republic of Ireland (ROI). Stopping criteria comprised 50 responses received, a 3-month window for response (February-April 2022) and 90% of statements passing consensus threshold. Threshold for consensus for each statement was agreed at 75%. Results: A total of 66 responses were analysed with 29/29 statements achieving consensus of which 27 attained ≥90% agreement. From the high degree of consensus, eight recommendations were derived regarding how detection and management of VWD can be improved to provide equity of care between men and women. Conclusion: Implementation of these eight recommendations across the VWD pathway has the potential to raise the standard of care for patients in the UK and ROI by reducing delays to diagnosis and treatment initiation.
MeSH term(s)	Male ; Humans ; Female ; von Willebrand Diseases/diagnosis ; von Willebrand Diseases/therapy ; Ireland ; Consensus ; Health Personnel ; United Kingdom ; von Willebrand Factor/metabolism
Chemical Substances	von Willebrand Factor
Language	English
Publishing date	2023-03-06
Publishing country	England
Document type	Journal Article
ZDB-ID	1229713-6
ISSN	1365-2516 ; 1351-8216 ; 1355-0691
ISSN (online)	1365-2516
ISSN	1351-8216 ; 1355-0691
DOI	10.1111/hae.14765
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Article ; Online: The relationship between heavy menstrual bleeding, iron deficiency, and iron deficiency anemia.

Munro, Malcolm G / Mast, Alan E / Powers, Jacquelyn M / Kouides, Peter A / O'Brien, Sarah H / Richards, Toby / Lavin, Michelle / Levy, Barbara S

American journal of obstetrics and gynecology

2023 Volume 229, Issue 1, Page(s) 1–9

Abstract: For reproductive-aged women, the symptom of heavy menstrual bleeding is highly prevalent and a major contributor to iron deficiency and its most severe manifestation, iron deficiency anemia. It is recognized that these 2 clinical entities are not only ... ...

Abstract	For reproductive-aged women, the symptom of heavy menstrual bleeding is highly prevalent and a major contributor to iron deficiency and its most severe manifestation, iron deficiency anemia. It is recognized that these 2 clinical entities are not only highly prevalent, but their interrelationship is poorly appreciated and frequently normalized by society, healthcare providers, and affected girls and women themselves. Both heavy menstrual bleeding and iron deficiency, with or without anemia, adversely impact quality of life-heavy menstrual bleeding during the episodes of bleeding and iron deficiency on a daily basis. These combined issues adversely affect the lives of reproductive-aged girls and women of all ages, from menarche to menopause, and their often-insidious nature frequently leads to normalization. The effects on cognitive function and the related work and school absenteeism and presenteeism can undermine the efforts and function of women in all walks of life, be they students, educators, employers, or employees. There is also an increasing body of evidence that suggests that iron deficiency, even in early pregnancy, may adversely impact fetal neurodevelopment with enduring effects on a spectrum of cognitive and psychological disorders, critically important evidence that begs the normalization of iron stores in reproductive-aged women. The authors seek to raise individual, societal, and professional awareness of this underappreciated situation in a fashion that leads to meaningful and evidence-based changes in clinical guidance and healthcare policy directed at preventing, screening, diagnosing, and appropriately managing both disorders. This manuscript provides evidence supporting the need for action and describes the elements necessary to address this pervasive set of conditions that not only affect reproductive-aged girls and women but also the lives of children everywhere.
MeSH term(s)	Pregnancy ; Child ; Female ; Humans ; Adult ; Anemia, Iron-Deficiency ; Menorrhagia/etiology ; Quality of Life ; Iron Deficiencies ; Iron
Chemical Substances	Iron (E1UOL152H7)
Language	English
Publishing date	2023-01-24
Publishing country	United States
Document type	Journal Article ; Review
ZDB-ID	80016-8
ISSN	1097-6868 ; 0002-9378
ISSN (online)	1097-6868
ISSN	0002-9378
DOI	10.1016/j.ajog.2023.01.017
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Article ; Online: Perioperative management of patients with von Willebrand disease.

O'Donnell, James S / Lavin, Michelle

Hematology. American Society of Hematology. Education Program

2019 Volume 2019, Issue 1, Page(s) 604–609

Abstract: Surgical procedures represent a serious hemostatic challenge for patients with von Willebrand disease (VWD), and careful perioperative management is required to minimize bleeding risk. Risk stratification includes not only the nature of the surgery to be ...

Abstract	Surgical procedures represent a serious hemostatic challenge for patients with von Willebrand disease (VWD), and careful perioperative management is required to minimize bleeding risk. Risk stratification includes not only the nature of the surgery to be performed but the baseline plasma von Willebrand factor (VWF) levels, bleeding history, and responses to previous challenges. Baseline bleeding scores (BSs) may assist in identification of patients with a higher risk of postsurgical bleeding. There remains a lack of consensus between best practice guidelines as to the therapeutic target and assays to be monitored in the postoperative period. Hemostatic levels are maintained until bleeding risk abates: usually 3 to 5 days for minor procedures and 7 to 14 days for major surgery. Hemostatic supplementation is more complex in VWD than in other bleeding disorders owing to the combined but variable deficiency of both plasma VWF and factor VIII (FVIII) levels. For emergency surgery, coadministration of VWF and FVIII is required to ensure hemostasis; however, for elective procedures, early infusion of VWF replacement therapy will stabilize endogenous FVIII. Because endogenous FVIII production is unaffected in patients with VWD, repeated VWF supplementation (particularly with plasma-derived FVIII-containing products) may lead to accumulation of FVIII. Frequent monitoring of plasma levels and access to hemostatic testing are, therefore, essential for patients undergoing major surgery, particularly with more severe forms of VWD.
MeSH term(s)	Aged ; Arthroplasty, Replacement, Knee ; Blood Loss, Surgical/prevention & control ; Factor VIII/metabolism ; Hemostatics/therapeutic use ; Humans ; Male ; Perioperative Care ; von Willebrand Diseases/blood ; von Willebrand Diseases/surgery ; von Willebrand Factor/metabolism
Chemical Substances	Hemostatics ; von Willebrand Factor ; F8 protein, human (839MOZ74GK) ; Factor VIII (9001-27-8)
Language	English
Publishing date	2019-12-06
Publishing country	United States
Document type	Case Reports ; Journal Article ; Research Support, Non-U.S. Gov't ; Review
ZDB-ID	2084287-9
ISSN	1520-4383 ; 1520-4391
ISSN (online)	1520-4383
ISSN	1520-4391
DOI	10.1182/hematology.2019000065
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Article: Current Challenges in the Peripartum Management of Women with von Willebrand Disease

Byrne, Bridgette / Ryan, Kevin / Lavin, Michelle

Seminars in Thrombosis and Hemostasis

(Personalized Approaches to Bleeding and Thrombotic Disorders)

2021 Volume 47, Issue 02, Page(s) 217–228

Series title	Personalized Approaches to Bleeding and Thrombotic Disorders
Abstract	For many women, pregnancy and childbirth represent their first major hemostatic challenges. Despite advancements in obstetric care, up to 2 to 5% of all deliveries are complicated by postpartum hemorrhage (PPH). To mitigate bleeding risk, physiological changes occur in pregnancy, including increases in plasma von Willebrand factor (VWF) and factor VIII levels. For women with von Willebrand disease (VWD), these physiological alterations are blunted or absent. As a result, women with VWD have a heightened risk of PPH, both primary (in the first 24 hours) and secondary (>24 hours to 6 to 12 weeks postpartum). Pregnancy and delivery management for women with VWD should therefore be carefully coordinated as part of a multidisciplinary team approach. In the absence of large-scale clinical trials, the management of women with VWD during pregnancy is guided by expert consensus guidelines. Clinical practices internationally are not uniform, and areas of considerable clinical uncertainty exist. Traditional peripartum plasma VWF thresholds for hemostatic cover and therapeutic targets are currently under scrutiny, as PPH is not eliminated in women with VWD who receive replacement therapy. The benefit and optimal duration of postpartum tranexamic acid have yet to be defined, and standardized methods of quantification of blood loss at the time of delivery are currently lacking. In this article, we review the evidence base to date and explore the current clinical challenges in the management of pregnant women with VWD.
Keywords	von Willebrand disease ; von Willebrand factor ; epidural anesthesia ; postpartum hemorrhage ; obstetrics
Language	English
Publishing date	2021-02-26
Publisher	Thieme Medical Publishers, Inc.
Publishing place	Stuttgart ; New York
Document type	Article
ZDB-ID	196901-8
ISSN	1098-9064 ; 0094-6176
ISSN (online)	1098-9064
ISSN	0094-6176
DOI	10.1055/s-0041-1723797
Database	Thieme publisher's database

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