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Educational Needs in Hemophilia A

Educational Needs in Hemophilia A

Thank you for your interest in this survey about new treatment options for hemophilia and integration of these options into clinical practice. The survey, which is being conducted by the International Society on Thrombosis and Haemostasis, is intended for health care professionals practicing in Hemophilia Treatment Centers and will take approximately 10 minutes to complete. Your participation is voluntary and all responses will be confidential. The results of this survey will guide the development of educational programs and content for physicians and other health care professionals involved in the care of individuals with hemophilia, as well as scientists with an interest in basic, translational, and clinical research in hemophilia.
 
Demographic Information
 
1. Which of the following best describes your professional category? Select one
2. What is your area of primary clinical/laboratory focus? Select one
3. What is your role in the care of individuals with hemophilia? Select all that apply
4. What percentage of your professional time is devoted to hemophilia patient care and/or basic/clinical research related to hemophilia? Select one
5. How many years of professional experience do you have related to bleeding disorders? Select one
7. How many adult patients (18 years or older) with hemophilia A do you see on average each month? Select one
8. How many adult patients (18 years or older) with hemophilia B do you see on average each month? Select one
9. How many pediatric patients (less than 18 years old) with hemophilia A do you see on average each month? Select one
10. How many pediatric patients (less than 18 years old) with hemophilia B do you see on average each month? Select one
Knowledge-Based Questions
 
11. Emicizumab is FDA-approved for treatment in which of the following patient populations? Select all that apply
12. After a loading dose of 3 mg/kg emicizumab by subcutaneous injection once weekly for the first 4 weeks, the appropriate maintenance dose is: Select one
13. Emicizumab interferes with all but which one of the following laboratory tests? Select one
14. In the event of breakthrough bleeding in patients treated with emicizumab, which of the following bypassing agents requires special caution in dosing and duration due to an associated increased risk of thrombotic microangiopathy and thrombotic events? Select one
15. Which of the following statements about the potential new treatment option for hemophilia, fitusiran, is NOT correct? Select one
16. Recent success with gene therapy in patients with hemophilia A and B have incorporated which of the following approaches? Select one
17. The majority of gene therapy for patients with hemophilia currently uses a viral vector transfer approach that results in: Select one
18. Which statement describes safety outcomes from recent investigations of gene therapy with expression of wild-type FIX in adults with hemophilia B? Select one
19. Which of the following inclusion criteria have been part of most clinical trials of gene therapy for hemophilia A? Choose all that apply
20. Which of the following has not been a common observation noted in clinical trials of gene therapy for patients with hemophilia? Select one
Perceptions of HTC/HCP Readiness for New Therapies
 
21. How would you rate your confidence in transitioning patients from replacement therapy to emicizumab? [On a scale of 1 to 5 with 1: not at all confident; and 5: completely confident] Select one
22. How would you rate your ability to answer patient questions about the safety and efficacy of gene therapy for hemophilia based on clinical trial results to date? [On a scale of 1 to 5 with 1: lowest ability—I would not be able to answer questions, and 5: expert ability] Select one
23. How would you rate your ability to describe how gene therapy may impact an individual’s current treatment for hemophilia? [On a scale of 1 to 5 with 1: lowest ability—not able to describe the impact on current therapy; and 5: expert ability] Select one
24. Which of the following are easiest when integrating new treatment options into your HTC? (choose the top 3)
25. Which of the following present the biggest challenge when integrating new treatment options into your HTC? (choose the top 3):
26. In the event of a newly available treatment option for hemophilia that required frequent (eg, weekly) monitoring (eg, lab tests, patient discussions, need for additional factor, and/or breakthrough bleeds), rate your confidence in the ability of your HTC to make the needed adjustments in coordinating care. [On a scale of 1 to 5 with 1: Not at all confident; and 5: completely confident] Select one
27. In the event of a newly available treatment option for hemophilia, rate your confidence in your ability to assess which patients would benefit from treatment [On a scale of 1 to 5 with 1: Not at all confident; and 5: completely confident] Select one
Educational Preferences
 
28. What resources or organizations do you use to obtain information about new therapies for hemophilia? Select all that apply
29. What resources or organizations do you recommend for your patients/caregivers to obtain information about new treatment options for hemophilia? Select all that apply
30. For which topics related to new therapies for hemophilia would you be interested in additional education? Select all that apply
31. Which educational formats do you prefer to receive education (either CME or non-CME) about new therapies for hemophilia? (Select 3)
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