Myelofibrosis Diagnosis and Treatment Survey "*" indicates required fields Step 1 of 12 8% 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! Diagnosis1. 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?* No Yes 8. Did you have ongoing issues with your enlarged spleen (splenomegaly) at one point in your journey?* No Yes 9. Did you have ongoing issues with your red blood cells (hemoglobin level or anemia) at one point in your journey?* No Yes 10. Did you have ongoing issues with your platelet cells (thrombocytopenia) at one point in your journey?* No 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? No 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?*50 Treatment15. 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?* No Yes Watch and wait18. Since the diagnosis, did you have a period where you were on a watch-and-wait strategy without active treatment (W&W)?* No Yes Hydroxyurea19. Did you receive Hydroxyurea (HU)?* No Yes JAK inhibitors20. Did you receive a JAK inhibitor?* No 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 transfusion21. Did you or do you receive blood transfusions?* No Yes Platelet transfusion22. Did you receive platelet transfusions?* No Yes Transplantation23. 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 capability24. 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?*5026. 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 living27. 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)*NameThis field is for validation purposes and should be left unchanged. Δ
