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Publication Details
AFRICAN RESEARCH NEXUS
SHINING A SPOTLIGHT ON AFRICAN RESEARCH
medicine
An international survey to inform priorities for new guidelines on von Willebrand disease
Haemophilia, Volume 26, No. 1, Year 2020
Notification
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Description
Introduction: von Willebrand disease (VWD) is an inherited bleeding disorder caused by a quantitative or qualitative dysfunction of von Willebrand factor. Clinicians, patients and other stakeholders have many questions about the diagnosis and management of the disease. Aim: To identify topics of highest importance to stakeholders that could be addressed by guidelines to be developed by the American Society of Hematology (ASH), the International Society on Thrombosis and Haemostasis (ISTH), the National Hemophilia Foundation (NHF) and the World Federation of Hemophilia (WFH). Methods: A survey to determine and prioritize topics to be addressed in the collaborative development of guidelines for VWD was distributed to international stakeholders including patients, caregivers and healthcare providers (HCPs). Representatives of the four organizations coordinated the distribution strategy. The survey focused on both diagnosis and management of VWD, soliciting 7-point Likert-scale responses and open-ended comments, in English, French and Spanish. We conducted descriptive analysis with comparison of results by stakeholder type, gender and countries' income classification for the rating questions and qualitative conventional content data analysis for the open-ended responses. Results: A total of 601 participants responded to the survey (49% patients/caregivers and 51% healthcare providers). The highest priority topics identified were diagnostic criteria/classification, bleeding assessment tools and treatment options for women and surgical patients. In contrast, screening for anaemia and differentiating plasma-derived therapy versus recombinant therapies received lower ratings. Conclusion: This survey highlighted areas of importance to a diverse representation of stakeholders in the diagnosis and management of VWD, providing a framework for future guideline development and implementation. © 2019 John Wiley & Sons Ltd
Authors & Co-Authors
Brignardello-Petersen, Romina
Canada, Hamilton
Mcmaster University
James, Paula D.
Canada, Kingston
Queen’s University
Mustafa, Reem A.
United States, Kansas City
University of Kansas Medical Center
Canada, Hamilton
Mcmaster University
Abdul-Kadir, Rezan
Unknown Affiliation
Ozelo, Margareth C.
Unknown Affiliation
Konkle, Barbara A.
Unknown Affiliation
Kouides, Peter A.
Unknown Affiliation
Laffan, Michael Arthur
Unknown Affiliation
Lavin, Michelle
Unknown Affiliation
Leebeek, Frank W.G.
Unknown Affiliation
McLintock, Claire K.
Unknown Affiliation
O'Donnell, James S.
Unknown Affiliation
Sidonio, Robert Francis
Unknown Affiliation
Tosetto, Alberto
Unknown Affiliation
El-Ekiaby, Magdy
Unknown Affiliation
Peyvandi, Flora A.
Unknown Affiliation
Robinson, Fiona
Unknown Affiliation
Skinner, Mark W.
Unknown Affiliation
Statistics
Citations: 29
Authors: 18
Affiliations: 5
Identifiers
Doi:
10.1111/hae.13881
ISSN:
13518216
Research Areas
Health System And Policy
Study Design
Cross Sectional Study
Study Approach
Qualitative
Quantitative
Participants Gender
Female