Patient perspectives and economic consequences of frequent tenders for coagulation factor concentrates in the era of extended half-life products (Héma-Québec version) |
Investigators:
Dr. Haowei (Linda) Sun, MD, MHSc, FRCPC1
Dr. Wanrudee Isaranuwatchai, PhD2
Dr. Haowei (Linda) Sun, MD, MHSc, FRCPC1
Dr. Wanrudee Isaranuwatchai, PhD2
Dr. Shannon Jackson, MD, FRCPC3
Dr. Natalia Rydz, MD, FRCPC4
Dr. Jayson Stoffman, MD, FRCPC5
Sarah Crymble6
Dr. Katie Dainty, PhD7,8
David Page 9
Dr. Michelle Sholzberg, MDCM, MSc, FRCPC 2,101
Dr. Natalia Rydz, MD, FRCPC4
Dr. Jayson Stoffman, MD, FRCPC5
Sarah Crymble6
Dr. Katie Dainty, PhD7,8
David Page 9
Dr. Michelle Sholzberg, MDCM, MSc, FRCPC 2,101
1 Division of Hematology, Department of Medicine, University of Alberta, Edmonton, Canada
2 Li Ka Shing Knowledge Institute, St. Michael’s Hospital, Toronto, Canada
3 Division of Hematology, Department of Medicine, University of British Columbia, Vancouver, Canada
4 Division of Hematology, Department of Medicine, University of Calgary, Calgary, Canada
5 Department of Pediatrics and Child Health, University of Manitoba, Winnipeg, Canada
6. Ontario Regional Blood Coordinating Network; St. Michael's Hospital, Toronto, Canada
7. Patient-Centred Outcomes, North York General Hospital
8 Institute of Health Policy, Management & Evaluation, University of Toronto, Toronto, Canada
9 Canadian Hemophilia Society
10 Department of Medicine and Laboratory Medicine & Pathobiology, St. Michael's Hospital, Toronto, Canada
2 Li Ka Shing Knowledge Institute, St. Michael’s Hospital, Toronto, Canada
3 Division of Hematology, Department of Medicine, University of British Columbia, Vancouver, Canada
4 Division of Hematology, Department of Medicine, University of Calgary, Calgary, Canada
5 Department of Pediatrics and Child Health, University of Manitoba, Winnipeg, Canada
6. Ontario Regional Blood Coordinating Network; St. Michael's Hospital, Toronto, Canada
7. Patient-Centred Outcomes, North York General Hospital
8 Institute of Health Policy, Management & Evaluation, University of Toronto, Toronto, Canada
9 Canadian Hemophilia Society
10 Department of Medicine and Laboratory Medicine & Pathobiology, St. Michael's Hospital, Toronto, Canada
You are being invited to complete a survey because you have hemophilia A or B, or you are the parent or caregiver of someone with hemophilia. The purpose of this research survey is to learn more about the views of people with hemophilia, and their parents/caregivers, related to recent Héma-Québec tender changes in 2018 requiring switches of clotting factor concentrates in many Canadians with hemophilia.
Study description
The Canadian Blood Services and Héma-Québec utilize a Request for Proposal (RFP) process to solicit bids for different clotting factors from potential suppliers every few years. An Advisory Committee reviews and scores each proposal, and makes recommendations to the Canadian Blood Services and Héma-Québec who make the final decision. While the RFP process has the benefit of lowering the cost of clotting factors, and make new products available to the Canadian hemophilia community, frequent RFP may lead to mandated product changes and MAY cause extra burden to patients and families. We do not know the impact on patients and families who experienced frequent product switches, such as worries about the safety and effectiveness of new product, extra clinic visits and bloodwork, concern about inhibitor risk with frequent changes, and emotional distress from frequent treatment changes. Part of this study will include estimating the economic impact that the product switch has had on you and your family.
In this study, we will answer some of these questions by gathering your views on the impact of frequent RFP processes as well as detailed information on your salary and time used for appointments and other obligations because of the transition. Your participation in this survey will take approximately 15-20 minutes of your time. There are no potential risks in this study, and no direct benefits to you. Indirect benefits include providing a more balanced view about the impact of frequent tender changes to policymakers, health economists and researchers.
Confidentiality
Please do not include any personal identifying information on the survey form itself. Survey responses will be kept in strict confidence by the research team. All materials will be retained in secure storage. SurveyMonkey’s survers are hosted in the continental US and thus, are subject to the Patriot Act.