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* 1. The information being asked in this survey is not intended to promote any treatment, the information will be used to measure an area of treatment with the hope of improving the long term care for those who manage their MPN Blood Cancer.  None of the information will be shared on an individual bases, but all information will be added and looked at as a whole.  There is no private or personal information being requested in this survey. We would like to thank you for your time and assistance in answering the questions.

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* 2. What is your MPN Diagnosis?

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* 3. How long have you been diagnosed with an MPN for?

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* 4. Are you on a current treatment for your MPN Blood Cancer?

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* 5. On a scale of 1 to 10 where 1 is not important and 10 is very important, how important is quality of life in the management of your MPN Blood Cancer?

1 10
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i We adjusted the number you entered based on the slider’s scale.

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* 6. How familiar are you with the  MPN 10 of quality of life list?

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* 7. Thinking of the MPN 10 assessment, Which is most important to you?

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* 8. How important are the following quality of life criteria to you in assessing your daily life?

  Very important Somewhat important not important not important at all
Satiety 
Abdominal pain
Inactivity
Problems with Concentration
Night Sweats
Itching
Bone Pain
Fever
Unintential Weight loss
Psychosocial - Anxiety, nervousness

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* 9. Thinking of the MPN 10 Quality of Life Criteria listed below, please rate them in order of importance to you, where 1 is the most important to you and 10 is the least important to you.

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* 10. When looking at your own quality of life concerns , please choose the one sentence that best describes your physician

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* 11. How much consideration do you think that MPN Physicans should put on the the psycho social aspect of a mpn patients health ?

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* 12. Thinking of your overall quality of life, during the past year, would you say that:

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* 13. Who would you currently discuss your quality of life with - Choose all that would apply

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* 14. When looking at your own quality of life concerns, please choose the sentence that best describes your last visit to your MPN Blood Cancer Physician.

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* 15. When looking at your own quality of life concerns, please choose the sentence that best describes you usual visit to your MPN Blood Cancer Physician.

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* 16. Thinking of your own quality of life, how well would you say your MPN Blood Cancer Physician understands it.

0 Not very well Adequately explains it 10 Extremely knowledgeable
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i We adjusted the number you entered based on the slider’s scale.

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* 17. Thinking of your quality of life and your MPN Treatment,  with 1 being the least favorable, and 10 being the most favorable, please select the one best describes you

0 My MPN Treatment has no effect on my quality of life. My MPN treatment has some effect on my quality of life. 10 My MPN Treatment has a lot of effect on my quality of life.
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i We adjusted the number you entered based on the slider’s scale.

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* 18. Thinking of my quality of life,and my MPN Treatment, with 0 being the least and 10 being the most,  please rate the one that best describes you

0 My MPN Treatment should not include a quality of life component My MPN Treatment should include some component of my quality of life 10 My MPN Treatment is all about my quality of life
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i We adjusted the number you entered based on the slider’s scale.

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* 19. Thinking of your quality of life discussions with your MPN Physician, during the past year, how many times has he/she discussed your quality of life with you as it related to your overall treatment?

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* 20. On a scale of 1 to 10 , where 1 is: I don't want more Quality of  Life discussion added to my MPN Treatment and 10 is I want a lot more Quality of Life discussion added to my treatment, how much more Quality of Life would you want added in your treatment and clinic visit?

0 No more Q of L added to my treatment 5 its just right 10 I would likfe more Quality of life discussion added to my treatment
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i We adjusted the number you entered based on the slider’s scale.

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* 21. If there was an opportunity to track your quality of life symptoms on a continual basis to share with your physican and the research community how likely would you be to participate?

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* 22. If you were participating in the continous tracking of your quality of life symptoms, which method would your prefer? Rank from 1 for most prefered and 5 for least preferred

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* 23. When thinking of the tracking of your quality of life symptoms and your prefered tracking method, how often do you think you would want to complete the exercise?

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* 24. If you had the opportunity to track your quality of life symptoms, as it related to your MPN Blood Cancer, would you be comfortable sharing your data with: Please choose all that apply

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* 25. Thinking of our current MPN Blood Cancer treatments, do you have an existing shared treatment decision making plan in place with your MPN Physician?

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* 26. In the future, if a shared treatment decision program was available to you, how likely are you to  participate?

0 not likely at all, I want my MPN Physician to make all decisions 5 I want to be consulted at some point in my treatment options 10 I want to be part of all my treatment options
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i We adjusted the number you entered based on the slider’s scale.

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* 27. When you think of the MPN Blood Cancer, what organization comes to mind first?

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* 28. Have you read, seen or searched for any information on MPN Blood Cancers from the following:

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* 29. What best describes your age?

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* 30. What is your gender

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