Mohamad A Kalot1, Mohammed Al-Khatib1, Nathan T Connell2, Veronica Flood3, Romina Brignardello-Petersen4, Paula James5, Reem A Mustafa1,4. 1. Outcomes and Implementation Research Unit, Department of Nephrology and Hypertension, University of Kansas Medical Center, Kansas City, KS, USA. 2. Hematology Division, Department of Medicine, Brigham and Women's Hospital and Harvard Medical School, Boston, MA, USA. 3. Division of Hematology/Oncology, Department of Pediatrics, Medical College of Wisconsin, Wauwatosa, WI, USA. 4. Department of Health Research Methods, Evidence, and Impact, McMaster University, Hamilton, ON, Canada. 5. Queen's University, Kingston, ON, Canada.
Abstract
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.
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.
Authors: E M De Wee; H M Knol; E P Mauser-Bunschoten; J G van der Bom; J C J Eikenboom; K Fijnvandraat; A De Goede-Bolder; B Laros-van Gorkom; P F Ypma; S Zweegman; K Meijer; F W G Leebeek Journal: Thromb Haemost Date: 2011-09-22 Impact factor: 5.249
Authors: Nathan T Connell; Veronica H Flood; Romina Brignardello-Petersen; Rezan Abdul-Kadir; Alice Arapshian; Susie Couper; Jean M Grow; Peter Kouides; Michael Laffan; Michelle Lavin; Frank W G Leebeek; Sarah H O'Brien; Margareth C Ozelo; Alberto Tosetto; Angela C Weyand; Paula D James; Mohamad A Kalot; Nedaa Husainat; Reem A Mustafa Journal: Blood Adv Date: 2021-01-12
Authors: Paula D James; Nathan T Connell; Barbara Ameer; Jorge Di Paola; Jeroen Eikenboom; Nicolas Giraud; Sandra Haberichter; Vicki Jacobs-Pratt; Barbara Konkle; Claire McLintock; Simon McRae; Robert R Montgomery; James S O'Donnell; Nikole Scappe; Robert Sidonio; Veronica H Flood; Nedaa Husainat; Mohamad A Kalot; Reem A Mustafa Journal: Blood Adv Date: 2021-01-12
Authors: Romina Brignardello-Petersen; Abdallah El Alayli; Nedaa Husainat; Mohamad A Kalot; Shaneela Shahid; Yazan Aljabirii; Alec Britt; Hani Alturkmani; Hussein El-Khechen; Shahrzad Motaghi; John Roller; Rezan Abdul-Kadir; Susie Couper; Peter Kouides; Michelle Lavin; Margareth C Ozelo; Angela Weyand; Paula D James; Nathan T Connell; Veronica H Flood; Reem A Mustafa Journal: Blood Adv Date: 2022-01-11
Authors: Mohamad A Kalot; Nedaa Husainat; Abdallah El Alayli; Omar Abughanimeh; Osama Diab; Sammy Tayiem; Bader Madoukh; Ahmad B Dimassi; Aref Qureini; Barbara Ameer; Jeroen C J Eikenboom; Nicolas Giraud; Claire McLintock; Simon McRae; Robert R Montgomery; James S O'Donnell; Nikole Scappe; Robert F Sidonio; Romina Brignardello-Petersen; Veronica H Flood; Nathan T Connell; Paula D James; Reem A Mustafa Journal: Blood Adv Date: 2022-01-11
Authors: Romina Brignardello-Petersen; Abdallah El Alayli; Nedaa Husainat; Mohamad Kalot; Shaneela Shahid; Yazan Aljabirii; Alec Britt; Hani Alturkmani; Hussein El-Khechen; Shahrzad Motaghi; John Roller; Ahmad Dimassi; Omar Abughanimeh; Bader Madoukh; Alice Arapshian; Jean M Grow; Peter Kouides; Michael Laffan; Frank W G Leebeek; Sarah H O'Brien; Alberto Tosetto; Paula D James; Nathan T Connell; Veronica Flood; Reem A Mustafa Journal: Blood Adv Date: 2022-01-11
Authors: Mohamad A Kalot; Nedaa Husainat; Sammy Tayiem; Abdallah El Alayli; Ahmad B Dimassi; Osama Diab; Omar Abughanimeh; Bader Madoukh; Aref Qureini; Barbara Ameer; Jorge Di Paola; Jeroen C J Eikenboom; Vicky Jacobs-Pratt; Claire McLintock; Robert Montgomery; James S O'Donnell; Robert Sidonio; Romina Brignardello-Petersen; Veronica Flood; Nathan T Connell; Paula D James; Reem A Mustafa Journal: Blood Adv Date: 2021-12-14
Authors: Gloria A Aguayo; Catherine Goetzinger; Renza Scibilia; Aurélie Fischer; Till Seuring; Viet-Thi Tran; Philippe Ravaud; Tamás Bereczky; Laetitia Huiart; Guy Fagherazzi Journal: J Med Internet Res Date: 2021-12-23 Impact factor: 5.428