APPENDIX A:

SURVEY OF PATIENT PREFERENCES FOR DISCONTINUING TYROSINE KINASE INHIBITORS IN CHRONIC MYELOID LEUKEMIA

Demographics
Unique id: ______________________
Age: _______________ years
Gender (please circle 1):		Male	Female
What is your highest education level completed: ❐ Did not finish high school ❐ High school ❐ College/university ❐ Post-secondary/graduate school ❐ Prefer not to say
What is your household income? ❐ <25,000 ❐ 25,000–50,0000 ❐ 50,000–100,000 ❐ 100,000–200,000 ❐ >200,000 ❐ Prefer not to say
How do you pay for your medications? ❐ Drug plan with 100% coverage ❐ Drug plan with partial coverage (you pay a portion) ❐ Drug plan with complete coverage up to maximum ❐ Provincial coverage (over 65 years old, disability, etc.) ❐ No drug plan (I pay for medications out of pocket) ❐ Do not know
Please rate your concern about payment for the medications you take for cml (please circle one):
	No concern	Minor concern	Very concerned
Tolerance of drugs for CML
Which statement best describes your feelings about medication for cml?
	Taking medication every day for cml is: ❐ Simple and easy and I remember 100% of the time ❐ Simple but sometimes hard to do and I remember about 75% of the time (3 days out of 4) ❐ Is a nuisance and I skip or forget doses about 50% of the time ❐ Is a major nuisance and I frequently skip or forget doses (more than half the time)
In most months I miss or skip my medication ❐ Never ❐ 1 to 5 days ❐ 6 to 10 days ❐ 11 to 15 days ❐ >16 days per month
I experience side effects from my medications ❐ Daily ❐ At least 50% of the time (> 15 days per month) ❐ About 25 to 49% of time (at least 1 week or 7 days per month) ❐ Less than 10 to 24% of time (3 to 6 days per month) ❐ Never
My Most Common Side Effects is/are (please indicate all applicable answers):
	________________________________________________________
	Nil	Minor	Tolerable	Tolerable but I adjust my activities or take medications for it	Intolerable
Nausea or vomiting or other gastrointestinal upset	❐	❐	❐	❐	❐
Muscle cramping	❐	❐	❐	❐	❐
Swelling or fluid retention (face or legs)	❐	❐	❐	❐	❐
Other (please list)	__________________________________________________________________
	__________________________________________________________________
	__________________________________________________________________
Side effects are bothersome enough that I ... ❐ Skip doses of medication regularly (more than 50% of the time) ❐ Skip doses of medication occasionally (5 days per month) ❐ Consider stopping drug if alternative were available ❐ Consider stopping drug
Have you ever thought about stopping your medication? ❐ Never ❐ Sometimes ❐ Often ❐ Usually ❐ All the time
What worries you most about tkis? ❐Day to day side effects ❐ Unknown side effects that may occur with long term use ❐ Drug costs ❐ Fear of losing response to this medication ❐ I have no concerns about taking this medication
Other—Please specify:    ____________________________________________________________________    ____________________________________________________________________    ____________________________________________________________________
What prevents you most from stopping you medication? ❐My doctor’s strong recommendation that I stay on it ❐ My fear of the disease cml going out of control ❐ My family’s concern about my disease
Other—Please specify:    ____________________________________________________________________    ____________________________________________________________________    ____________________________________________________________________
Patient Preference
Scenario
The success of drugs like Imatinib (Gleevec), Dasatinib (Sprycel) and Nilotinib (Tasigna) called tyrosine kinase inhibitors (tkis) in treatment of chronic myeloid leukemia has dramatically improved the control of this disease in the past decade. Lifelong tki therapy for patients with cml with regular monitoring is currently the accepted standard of care. This means that your doctor may have told you that you have to stay on this treatment indefinitely.
The majority of patients obtain a very good response and a proportion of patients have undetectable disease. The term undetectable disease generally means that we are unable to detect cml cells or cml genetic material using the most sensitive laboratory tests. The most sensitive dna tests are currently not available at most centres, including the London Health Sciences Centre, since they are currently considered experimental at present times. Recent studies show that up to 40% of patients with undetectable disease can stop their tki treatment without signs of relapse at 3 years. Furthermore, it appears that the 60% of patients who relapse after stopping their tki treatment are able to restart their previous tki treatment with good results.
Consider the following hypothetical questions. These are pretend questions and do not impact your current treatment with your own doctor.
Given the choice and risk of relapse, we would like to understand if you would consider stopping tki treatment.
1. Are you willing to stop your medication for cml if you are monitored closely with very sensitive blood tests (please circle one)?
Yes	No
2. I would be willing to stop medication if the chance of relapse after stopping were:
3. If my disease relapses after stopping medication, we know that almost all patients respond to restarting the same pills. Knowing this, I would be willing to stop medication if the chance of relapse after stopping were:
4. If my disease relapses after stopping medication and I were to restart a medication for cml, how likely are you to take your medications every day:
	Very unlikely	Unlikely	Neither unlikely nor likely	Likely	Very likely
5. In the following questions, if the risk of relapse is different, how likely are you to stop mediations for your cml?
If the risk of relapse were 20%?
	I would absolutely stop	I would likely stop	I would be neutral	I would likely not stop	I would absolutely not stop
If the risk of relapse were 60%?
	I would absolutely stop	I would likely stop	I would be neutral	I would likely not stop	I would absolutely not stop
If the risk of relapse were 40%?
	I would absolutely stop	I would likely stop	I would be neutral	I would likely not stop	I would absolutely not stop
If the risk of relapse were 80%?
	I would absolutely stop	I would likely stop	I would be neutral	I would likely not stop	I would absolutely not stop
6. Are any of the following factors concerns about stopping treatment? (Yes or No)
_______ Fear of the disease cml going out of control _______ Fear that if the disease relapses you will not respond to treatment _______ Fear that if the disease relapses you will not be able to afford treatment   _______ Fear that if the disease relapses you will experiences more side effects _______ Fear that you will not get adequate follow-up by your doctor _______ Fear that you will disappoint family or friends

cml = chronic myeloid leukemia; tki= tyrosine kinase inhibitor.