Myelofibrosis Diagnosis and Treatment Survey

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Step 1 of 12

Project objectives

If you have myelofibrosis (MF) or if you take care of someone with MF, this survey is for you. By participating, you share your experience and contribute to improving patient care in MF. Heal Canada is a not-for-profit patient organization working to understand MF patients’ needs by conducting this 15-minute survey.

We have designed the survey to ensure your privacy and confidentiality. Your anonymized responses are used only by Heal Canada for this project.

We sincerely appreciate your participation. Thank you!

Diagnosis

1. What is your MF diagnosis?*

Primary MF

Post-PV MF

Post-ET MF

Other (please specify)

1. What is your MF diagnosis? (Other)*

2. Which mutation do you have for your MF diagnosis?

JAK2

CALR

MPL

I am not sure

Other (please specify)

2. Which mutation do you have for your MF diagnosis? (Other)*

3. Which risk category are you in?*

Low

Intermediate-1

Intermediate-2

High

I am not sure

Other (please specify)

3. Which risk category are you in? (Specify)*

4. How long did it take before getting your MF diagnosis?*

Less than a week

Between one to four weeks

Between one to three months

More than three months

5. When did you receive your MF diagnosis?*

<18 years old

18-30 years old

31-49 years old

50-64 years old

65+ years old

6. How long ago did you receive your MF diagnosis?*

Less than a year

1 to 3 years

3 to 5 years

More than five years

7. Did your physician explain that myelofibrosis is a progressive blood cancer?*

Yes

8. Did you have ongoing issues with your enlarged spleen (splenomegaly) at one point in your journey?*

Yes

9. Did you have ongoing issues with your red blood cells (hemoglobin level or anemia) at one point in your journey?*

Yes

10. Did you have ongoing issues with your platelet cells (thrombocytopenia) at one point in your journey?*

Yes

11. Have you experienced any of the following symptoms? Select all options that apply to your situation.*

Fatigue, weakness and/or tiredness

Itching

Night sweats

Fever

Depression

Abdominal pain

Bone pain

Shortness of breath

Early satiety (feeling full)

Easy bruising or bleeding

Other (please specify)

11. Have you experienced any of the following symptoms? Select all options that apply to your situation. (Specify)*

12. Do you use a tool to track your symptoms?

Yes (please specify)

12. Do you use a tool to track your symptoms? (Specify)*

13. Which aspect of your disease is stressful for you? Select all options that apply to your situation.*

Managing my symptoms

Managing my blood count

Having an enlarged spleen

Thinking that the disease will progress

Other (please specify)

None of the above

13. Which aspect of your disease is stressful for you? Select all options that apply to your situation. (Specify)*

14. How the disease impacted your QoL?*

Treatment

15. Have you been limited in your treatment options due to one of these conditions? Select all options that apply to your situation.*

My red blood cells or hemoglobin level were too low (anemia)

My platelets level was too low (thrombocytopenia)

I developed antibodies due to the blood transfusion

Other (please specify)

15. Have you been limited in your treatment options due to one of these conditions? Select all options that apply to your situation. (Specify)*

16. In which city and country did you live in at your diagnosis?*

17. Did you have to move to receive your MF treatments?*

Yes

Watch and wait

18. Since the diagnosis, did you have a period where you were on a watch-and-wait strategy without active treatment (W&W)?*

Yes

Hydroxyurea

19. Did you receive Hydroxyurea (HU)?*

Yes

JAK inhibitors

20. Did you receive a JAK inhibitor?*

Yes, Jakavi or Jakafi (ruxolitinib)

Yes, Inrebic (fedratinib)

Yes, Ojjaara (momelotinib)

Yes, Vonjo (pacritinib)

Yes, other JAK inhibitor

Other (please specify)

20. Did you receive a JAK inhibitor? (Specify)*

Blood transfusion

21. Did you or do you receive blood transfusions?*

Yes

Platelet transfusion

22. Did you receive platelet transfusions?*

Yes

Transplantation

23. Did you receive transplantation (hematopoietic stem cell or bone marrow cell transplantation)?*

No, I wasn’t offered this treatment

No, they couldn’t find a match donor

No, I wasn’t a good candidate, too many co-morbidities

Yes

Other (please specify)

23. Did you receive transplantation (hematopoietic stem cell or bone marrow cell transplantation)? (Specify)*

Impact of MF on working capability

24. Which of the following categories best describes your employment status at diagnosis?*

Employed, working full-time

Employed, working part-time

Not employed, looking for work

Not employed, not looking for work

Retired

Other (please specify)

24. Which of the following categories best describes your employment status at diagnosis? (Specify)*

25. Did MF financially impact your life and your family?*

26. How does your MF affect your working capabilities?*

MF had a minimal impact on my working capabilities

I kept my job but was frequently absent because of MF

I reduced my working hours because of MF

I had to change jobs and/or career plans because of MF

I retired early because of MF

I adhere to a long-term disability program because of MF

Impact of MF on daily living

27. When you think about your MF journey, what challenges do you face daily? Select all options that apply to your situation.*

I don’t face specific challenges

Financial Struggles

Work-Life Balance

Emotional or Mental Health

Healthcare Access

Family Responsibilities

Transportation

Educational Challenges

Daily household tasks

Having a good QoL daily

Other (please specify)

27. When you think about your MF journey, what challenges do you face daily? Select all options that apply to your situation. (Specify)*

Name

This field is for validation purposes and should be left unchanged.