Severe Aplastic Anemia (SAA) Survey - Eltrombopag

The Aplastic Anemia and Myelodysplasia Association of Canada (AAMAC) is looking for individuals with severe aplastic anemia (SAA) and individuals who have been treated with eltrombopag to talk about their experience.

The Canadian Agency for Drugs and Technologies in Health (CADTH) does health technology assessments and makes recommendations about whether federal, provincial and territorial health plans should pay for new drugs. CADTH will soon be reviewing the use of eltrombopag to treat patients with SAA. AAMAC will be making a written submission to ensure that patient voices are represented during the review process and we would like to speak with patients about their experience with SAA. 

This survey is important for preparing a submission to influence whether eltrombopag will be paid for by drug insurance plans. Please complete the survey by June 21, 2023.

You do not need to live in Canada to respond to this survey; we appreciate input from every patient.

We are also interested in speaking directly with those who have treatment experience with eltrombopag. Please contact Adam Waiser, who is assisting AAMAC with this work, at adamwaiser@hotmail.com if you would be willing to participate in a brief telephone interview.
 
We would like to thank everyone for helping to ensure that patient experiences are represented in the drug funding review process.
 
Privacy Policy: To ensure patient privacy and confidentiality, individual responses will not be identifiable. It is important to note that selected quotations may be used for the final submission to government agencies without reference to patient name or any other information that could lead to identifying the patient.
Questions 1-14 and 24-27 are intended for all respondents. Questions 15-23 are for patients with eltrombopag treatment experience.

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* 1. Have you been diagnosed with severe aplastic anemia (SAA)?

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* 2. How many years ago were you diagnosed with SAA?

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* 3. How would you describe the experience of living with SAA?

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* 4. What symptoms have you experienced as a result of SAA? [check all that apply]

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* 5. On a scale of 1 (Strongly Disagree) to 5 (Strongly Agree), please rate how much you agree with the following statement: My current therapies, excluding eltrombopag, are able to manage my SAA symptoms.

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* 6. Do you think that you have unmet treatment needs in your day-to-day life?

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* 7. What treatments have you received since your diagnosis? [check all that apply]

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* 8. Please describe your overall experience with these treatments (excluding eltrombopag) including both positive and negative experiences.

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* 9. What side effects have you experienced as a result of treatment?

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* 10. If you experienced treatment side effects, which did you find most difficult to tolerate?

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* 11. Have you had difficulties accessing SAA treatments? [check all that apply]

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* 12. Have you needed financial assistance due to costs associated with SAA or its treatment?

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* 13. On a scale of 1 (not important) to 5 (very important), how important are these outcomes for your SAA treatment?

  1 - not important 2 3 4 5 - very important n/a
Improving complete blood count (CBC) and reticulocyte count
Reducing SAA symptoms
Limiting long-term disease consequences
Managing treatment side effects
Preventing relapse
Improving quality of life

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* 14. On a scale of 1 (Will Not Tolerate Side Effects) to 10 (Will Tolerate Significant Side Effects), how willing would you be to tolerate new side effects from therapies that can reduce SAA symptoms and limit long-term disease consequences?

Questions 15-23 are for patients with eltrombopag treatment experience. If you have not received this treatment, you can proceed directly to Question 24.

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* 15. As an SAA patient, have you been treated with eltrombopag?

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* 16. How long were you treated with eltrombopag?

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* 17. Are you still receiving eltrombopag for treatment of SAA?

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* 18. On a scale of 1 (much worse) to 5 (much better), how has your life changed on eltrombopag compared to other therapies that you received?

  1 - much worse 2 3 4 5 - much better n/a
Complete blood count (CBC) and reticulocyte count
SAA symptoms
Treatment side effects
Quality of life
Ability to work
Ability to sleep
Ability to care for children

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* 19. What side effects have you experienced while on eltrombopag?

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* 20. How much can you tolerate the side effects associated with eltrombopag on a scale of 1 (completely intolerable) to 10 (completely tolerable)?

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* 21. Did you have any difficulty accessing eltrombopag?

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* 22. Overall, what has been your experience with eltrombopag? Describe the positive and negative.

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* 23. Based on your personal experiences with eltrombopag, would you recommend it to other patients with SAA?

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* 24. What country are you from?

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* 25. If you are Canadian, what province are you from?

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* 26. Would you be willing to participate in a telephone survey to discuss your experience with eltrombopag?

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* 27. If yes, please enter your email address and/or phone number below.

If you have a caregiver/partner who is willing to participate in this survey, please allow them to complete the following questions by themselves.

If you don't have a caregiver/partner or if they do not wish to participate in this survey, click Done at the bottom of the page to complete the survey.

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* 28. What is your relationship to the SAA patient?

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* 29. How would you describe the severity of the challenges you have faced as a caregiver/partner on a scale of 1 (not at all severe) to 5 (very severe)? Please elaborate in the comments section.

  1 - not at all severe 2 3 4 5 - very severe n/a
Financial
Health
Educational
Social
Occupational

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* 30. What type of support is or would be most helpful for you to care for someone with SAA?

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* 31. How would you describe the effect of eltrombopag on the patient for whom you are caring?

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* 32. How did treatment with eltrombopag affect your responsibilities as a caregiver/partner?

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