Form Approved
OMB# 0935-0118
Exp. Date 12/31/2018

Your Experiences with Cancer

This survey is about the lasting effects of cancer and cancer treatments on the lives of those who have been diagnosed with cancer.

The survey will ask about the effects of cancer, its treatment, or the lasting effects of that treatment on your employment, finances, health insurance coverage, and life in general. The goal of this survey is to help improve experiences of people diagnosed with cancer in the future. Please take the time to answer these questions about your experiences with cancer.

Your participation is voluntary and all of your answers will be kept confidential to the extent permitted by law. If you have any questions about this survey, please call Alex Scott at 1-800-945-MEPS (6377).

This survey should be completed by
NAME:
DOB: PID:
RUID:

When you have completed the survey, return it to your interviewer.

Your responses will be kept confidential to the extent permitted by law, including AHRQ’s confidentiality statute, 42 USC 299c-3(c). That law requires that information collected for research conducted or supported by AHRQ that identifies individuals or establishments be used only for the purpose for which it was supplied unless you consent to the use of the information for another purpose. Public reporting burden for this collection of information is estimated to average 20 minutes per response, the estimated time required to complete the survey. An agency may not conduct or sponsor, and a person is not required to respond to, a collection of information unless it displays a currently valid OMB control number. Send comments regarding this burden estimate or any other aspect of this collection of information, including suggestions for reducing this burden, to AHRQ Reports Clearance Officer Attention: PRA, Paperwork Reduction Project (0935-0118), AHRQ, 5600 Fishers Lane Room #07W42, Rockville, MD 20857.




Department of Health and Human Services (HHS) logo

The Agency for Healthcare Research and Quality and
The Centers for Disease Control and Prevention of the
U.S. Department of Health and Human Services





Section 1. Cancer History

This first section asks about your cancer history.

Answer each question by marking sample check box checked your response or filling in a number when necessary.

1.
Have you ever been told by a doctor or other health professional that you had cancer or a malignancy of any kind?
empty check box Yes
empty check box No   [Please stop. Thank you for your time. This survey is complete.]

2.
Was your only cancer diagnosis or treatment before the age of 18?
empty check box Yes   [Please stop. Thank you for your time. This survey is complete.]
empty check box No

3.
Are you currently being treated for cancer — that is are you planning or recovering from cancer surgery, or receiving chemotherapy, radiation therapy, or hormonal therapy for your cancer?
empty check box Yes   GO TO Question 7
empty check box No

4.
About how long ago did you receive your last cancer treatment?
empty check box Less than 1 year ago
empty check box 1 year ago to less than 3 years ago
empty check box 3 years ago to less than 5 years ago
empty check box 5 years ago to less than 10 years ago
empty check box 10 years ago to 20 years ago
empty check box More than 20 years ago
empty check box I have not been treated for cancer

5.
Did a doctor or other health professional ever tell you that your cancer had come back?
empty check box Yes
empty check box No   GO TO Section 2

6.
What was the most recent year a doctor or health professional told you that your cancer had come back?
Year   GO TO Section 2

7.
Is this the first time you have been treated for any type of cancer?
empty check box Yes
empty check box No

Return to Sections Menu


Section 2. Changes to Your Work Schedule

8.
At any time from when you were first diagnosed with cancer until now, were you working for pay at a job or business?
empty check box Yes
empty check box No   GO TO Question 23

These next questions ask about different ways cancer, its treatment, or the lasting effects of that treatment may have affected your work – that is, your hours, duties, or employment status.

As you answer these questions, please think about the entire time from when you were first diagnosed with cancer to now.

If you have had more than one type of cancer please think about your experiences across all of them. If that is not possible, please focus on the most severe, and if they were equally severe, please focus on the most recent.

9.
At any time since your first cancer diagnosis, did you take extended paid time off from work, unpaid time off, or make a change in your hours, duties or employment status?
empty check box Yes
empty check box No   GO TO Question 15

10.
Did you make these work changes...
empty check box Because of your cancer, its treatment or its lasting effects?
empty check box Some other reason?   GO TO Question 15

11.
Did you ever take extended paid time off from work (vacation, sick time and/or disability leave)? By extended time off, we mean more than an occasional day off here and there.
empty check box Yes
empty check box No   GO TO Question 13

12.
When did you take extended paid time off from work? Mark sample check box checked all that apply.
empty check box At the time of diagnosis
empty check box During treatment
empty check box Less than one year after treatment was finished
empty check box One year or more after treatment was finished

13.
Did you ever change from working full-time to working part-time or change to a less demanding job?
empty check box Yes
empty check box No

14.
Did you ever change from a set work schedule, where you start and end at the same time every day, to a flexible work schedule, where your start and end times vary from day-to-day?
empty check box Yes
empty check box No

15.
Because of your cancer, its treatment, or its lasting effects, did you ever decide not to pursue an advancement or promotion?
empty check box Yes
empty check box No

16.
Because of your cancer, its treatment, or its lasting effects, did you retire earlier than you had planned?
empty check box Yes
empty check box No

Return to Sections Menu


Section 3. Other Aspects of Work

Please continue to think about all your work experiences from the time you were first diagnosed with cancer to now.

If you have had more than one type of cancer please think about your experiences across all of them. If that is not possible, please focus on the most severe, and if they were equally severe, please focus on the most recent.

17.
Did you ever feel that your cancer, its treatment, or the lasting effects of that treatment interfered with your ability to perform any physical tasks required by your job?
empty check box Yes
empty check box No
empty check box I was never required to perform physical tasks as part of my job

18.
Did you ever feel that your cancer, its treatment, or the lasting effects of that treatment interfered with your ability to perform any mental tasks required by your job?
empty check box Yes
empty check box No

19.
Did you ever feel that, because of your cancer, its treatment, or the lasting effects of that treatment, you were less productive at work?
empty check box Yes
empty check box No

20.
Did you ever worry that, because of the effects of cancer on your health, you might be forced to retire or quit work before you are ready?
empty check box Yes
empty check box No

21.
Did you ever stay at a job in part because you were concerned about losing your health insurance?
empty check box Yes
empty check box No   GO TO Question 23

22.
Were you concerned about losing your health insurance because of your cancer?
empty check box Yes
empty check box No

23.
Since your cancer diagnosis, did your spouse or significant other ever stay at a job in part because he/she was concerned about losing health insurance for the family?
empty check box Yes
empty check box No
empty check box Does not apply

Return to Sections Menu


Section 4. Caregivers

This section is about caregivers, meaning friends or family members who may have provided help with getting to the doctor, going to appointments with you, making decisions about treatment, or providing other types of care and support during or after cancer treatment.

Please continue to think about the time you were first diagnosed with cancer to now.

If you have had more than one type of cancer please think about your experiences across all of them. If that is not possible, please focus on the most severe, and if they were equally severe, please focus on the most recent.

24.
Since the time you were first diagnosed with cancer, has any friend or family member provided care to you during or after your cancer treatment?
empty check box Yes
empty check box No   GO TO Section 5

25.
Who was your caregiver? Mark sample check box checked all that apply.
empty check box Spouse
empty check box Child
empty check box Sibling
empty check box Parent
empty check box Other relative
empty check box Friend
empty check box Other

26.
Because of your cancer, its treatment, or the lasting effects of that treatment, did any of your caregivers ever take extended paid time off from work, unpaid time off, or make a change in their hours, duties or employment status?
empty check box Yes
empty check box No   GO TO Section 5
empty check box None of my caregivers were employed   GO TO Section 5
empty check box I don’t know   GO TO Section 5

27.
Did any of your caregivers ever take extended paid time off from work, unpaid time off, or make a change in their hours, duties, or employment status for at least 2 months?
empty check box Yes
empty check box No
empty check box I don’t know

Return to Sections Menu


Section 5. Experiences with Health Insurance

The next few questions are about health insurance coverage from the time you were first diagnosed with cancer to now.

If you have had more than one type of cancer please think about your experiences across all of them. If that is not possible, please focus on the most severe, and if they were equally severe, please focus on the most recent.

28.
At any time from when you were first diagnosed with cancer to now, were you covered by health insurance that paid for all or part of your medical care, tests or cancer treatment?
empty check box Yes
empty check box No   GO TO Section 6
empty check box I don’t know   GO TO Section 6

29.
What type of health insurance did you have when you were diagnosed with cancer?

Mark sample check box checked all that apply.
empty check box Private
empty check box Medicare
empty check box Medi-gap
empty check box Medicaid
empty check box Military (TRICARE, VA, CHAMPUS)
empty check box Indian Health Service
empty check box State-sponsored health plan
empty check box Other government program
empty check box Single service plan (e.g., dental, vision, prescriptions)
empty check box No coverage of any type

30.
Was there ever a time when health insurance refused to cover a visit for your cancer to the doctor or facility of your choice, or a specific treatment or procedure?
empty check box Yes
empty check box No
empty check box Does not apply

31.
Was there ever a time when your current health insurance did not provide adequate coverage for your cancer and care-related expenses?
empty check box Yes
empty check box No
empty check box Does not apply

32.
In regard to your current health insurance coverage for your cancer, how does it compare to a year ago? Is it better, worse, or about the same?
empty check box Better
empty check box About the same
empty check box Worse
empty check box I don’t know
empty check box Does not apply

33.
How difficult was it to find a plan you could afford for your cancer, including your cancer doctor, prescription medication, or other treatment? Would you say…
empty check box Very difficult
empty check box Somewhat difficult
empty check box Not at all difficult
empty check box I don’t know
empty check box Does not apply

34.
How difficult was it to find a plan with the type of coverage you needed for your cancer, including your cancer doctor, prescription medication, or other treatment? Would you say…
empty check box Very difficult
empty check box Somewhat difficult
empty check box Not at all difficult
empty check box I don’t know
empty check box Does not apply

Return to Sections Menu


Section 6. The Effects of Cancer and Its Treatment on Finances

The next questions ask about different kinds of financial burden you or your family may have experienced because of your cancer, its treatment, or the lasting effects of that treatment.

Please continue to think about all the time from when you were first diagnosed with cancer to now.

If you have had more than one type of cancer please think about your experiences across all of them. If that is not possible, please focus on the most severe, and if they were equally severe, please focus on the most recent.

35.
Because of your cancer, its treatment or the lasting effects of that treatment, did you have any costs you had to pay out of your own pocket in the following categories?

Mark sample check box checked all that apply.
empty check box Medical expenses (e.g., medications, medical equipment or supplies)
empty check box Transportation
empty check box Lodging
empty check box Child care
empty check box Home or respite care
empty check box I had no out-of-pocket costs
empty check box I don’t know/I am not sure

36.
Have you or has anyone in your family had to borrow money or go into debt because of your cancer, its treatment, or the lasting effects of that treatment?
empty check box Yes
empty check box No   GO TO Question 38

37.
How much did you or your family borrow, or how much debt did you incur because of your cancer, its treatment, or the lasting effects of that treatment?
empty check box Less than $10,000
empty check box $10,000 to $24,999
empty check box $25,000 to $49,999
empty check box $50,000 to $74,999
empty check box $75,000 to $99,999
empty check box $100,00 or more

38.
Have you or your family had to make any other kinds of financial sacrifices because of your cancer, its treatment, or the lasting effects of that treatment?

Mark sample check box checked all that apply.
empty check box Reduced spending on vacation or leisure activities
empty check box Delayed large purchases (e.g., car)
empty check box Reduced spending on basics (e.g., food and clothing)
empty check box Used savings set aside for other purposes (e.g., retirement, educational funds, family support)
empty check box Made a change to living situation (e.g., sold, refinanced, or moved to a smaller residence)
empty check box Other

39.
Please think about medical care visits for cancer, its treatment, or the lasting effects of that treatment. Have you ever been unable to cover your share of the cost of those visits?
empty check box Yes
empty check box No

40.
Did you or your family ever file for bankruptcy because of your cancer, its treatment, or the lasting effects of that treatment?
empty check box Yes
empty check box No

41.
Have you ever worried about having to pay large medical bills related to your cancer?
empty check box Yes
empty check box No

42.
Have you ever worried about your family’s financial stability because of your cancer, its treatment or lasting effects of that treatment?
empty check box Yes
empty check box No

43.
Have you ever been concerned about keeping your job and income, or that your earnings will be limited in the future because of your cancer?
empty check box Yes
empty check box No

Return to Sections Menu


Section 7. Medical Care for Cancer

These next questions ask about certain experiences you may have had when receiving medical care for cancer from the time you were first diagnosed to now.

If you have had more than one type of cancer please think about your experiences across all of them. If that is not possible, please focus on the most severe, and if they were equally severe, please focus on the most recent.

44.
At any time since you were first diagnosed with cancer, did any doctor or other healthcare provider, including your current healthcare provider, ever discuss with you...
a.
The need for regular follow-up care and monitoring even after completing your treatment?
empty check box Discussed it with me in detail
empty check box Briefly discussed it with me
empty check box Did not discuss it at all
empty check box I don't remember
b.
Late or long-term side effects of cancer treatment you may experience over time?
empty check box Discussed it with me in detail
empty check box Briefly discussed it with me
empty check box Did not discuss it at all
empty check box I don't remember
c.
Your emotional or social needs related to your cancer, its treatment, or the lasting effects of that treatment?
empty check box Discussed it with me in detail
empty check box Briefly discussed it with me
empty check box Did not discuss it at all
empty check box I don't remember
d.
Lifestyle or health recommendations such as diet, exercise, quitting smoking?
empty check box Discussed it with me in detail
empty check box Briefly discussed it with me
empty check box Did not discuss it at all
empty check box I don't remember
e.
Your costs for cancer care paid out of your own pocket?
empty check box Discussed it with me in detail
empty check box Briefly discussed it with me
empty check box Did not discuss it at all
empty check box I don't remember
f.
A summary of all the cancer treatments you received?
empty check box Discussed it with me in detail
empty check box Briefly discussed it with me
empty check box Did not discuss it at all
empty check box I don't remember

45.
Did you ever delay, forego, or have to make other changes to any of the following cancer care because of cost? Mark

sample check box checked all that apply.
empty check box Prescription medicine
empty check box Visit to specialist
empty check box Treatment (other than prescription medicine)
empty check box Follow up care
empty check box Mental health services
empty check box Other

46.
At any time since you were first diagnosed with cancer, did you get all of the medical care, tests, or treatments that you or your doctor believed were necessary?
empty check box Yes  GO TO Section 8
empty check box No

47.
Which of these are reasons you did not get all of the medical care, tests, or treatments you or a doctor believed you needed?

Mark sample check box checked yes or no for each item below.
Yes, a reason
No, not a reason
a.
Couldn’t afford care
empty check box
empty check box
b.
Insurance company wouldn't approve or pay for care
empty check box
empty check box
c.
Doctor did not accept your insurance
empty check box
empty check box
d.
Had problems getting to doctor's office
empty check box
empty check box
e.
Couldn't get time off from work
empty check box
empty check box
f.
Didn't know where to go to get care
empty check box
empty check box
g.
Couldn't get child care/adult care
empty check box
empty check box
h.
Didn't have time, care/ test/treatment took too long
empty check box
empty check box

Return to Sections Menu


Section 8. The Effects of Cancer and Its Treatment on Life in General

The last few questions in the survey ask about how your cancer, its treatment and the lasting effects of that treatment may have influenced certain parts of your life.

If you have had more than one type of cancer please think about your experiences across all of them. If that is not possible, please focus on the most severe, and if they were equally severe, please focus on the most recent.

48.
Did your cancer, its treatment, or the lasting effects of that treatment ever limit the kind or amount of activities you do outside of work, such as shopping, child care, exercising, studying, work around the house, and so on?
empty check box Yes
empty check box No   GO TO Question 51

49.
How long were you or have you been limited in the kind or amount of usual daily activities?
empty check box Less than 6 months
empty check box 6 months to less than 1 year
empty check box 1 year to less than 3 years
empty check box 3 years to less than 5 years
empty check box 5 years to less than 10 years
empty check box More than 10 years

50.
Is this limitation ongoing?
empty check box Yes
empty check box No

51.
Did you ever feel that your cancer, its treatment, or the lasting effects of that treatment interfered with your ability to perform any mental tasks as part of your usual daily activities?
empty check box Yes
empty check box No

52.
Did you ever have a problem understanding health insurance or medical bills related to your cancer, its treatment, or the lasting effects of that treatment?
empty check box Yes
empty check box No

53.
How often do you worry that your cancer may come back or get worse?
empty check box Never
empty check box Rarely
empty check box Sometimes
empty check box Often
empty check box All the time

54.
Have any of the following been positive things about your experiences with your cancer, its treatment, or the lasting effects of that treatment?

Mark sample check box checked yes or no for each item below.
Yes
No
a.
It has made me a stronger person
empty check box
empty check box
b.
I can cope better with life's challenges
empty check box
empty check box
c.
It became a reason to make positive changes in my life
empty check box
empty check box
d.
It has made me have healthier habits
empty check box
empty check box

55.
In general, how would you rate your physical health?
empty check box Excellent
empty check box Very Good
empty check box Good
empty check box Fair
empty check box Poor

56.
To what extent are you able to carry out your everyday physical activities such as walking, climbing stairs, carrying groceries, or moving a chair?
empty check box Completely
empty check box Mostly
empty check box Moderately
empty check box A little
empty check box Not at all

57.
In the past 7 days, how would you rate your pain on average?
empty check box 0 – No pain
empty check box 1
empty check box 2
empty check box 3
empty check box 4
empty check box 5
empty check box 6
empty check box 7
empty check box 8
empty check box 9
empty check box 10 – Worst imaginable pain

58.
In the past 7 days, how would you rate your fatigue on average?
empty check box None
empty check box Mild
empty check box Moderate
empty check box Severe
empty check box Very Severe

59.
In general, would you say your quality of life is:
empty check box Excellent
empty check box Very Good
empty check box Good
empty check box Fair
empty check box Poor

60.
In general, how would you rate your mental health, including your mood and your ability to think?
empty check box Excellent
empty check box Very Good
empty check box Good
empty check box Fair
empty check box Poor

61.
In general, how would you rate your satisfaction with social activities and relationships?
empty check box Excellent
empty check box Very Good
empty check box Good
empty check box Fair
empty check box Poor

62.
In the past 7 days, how often have you been bothered by emotional problems such as feeling anxious, depressed or irritable?
empty check box Never
empty check box Rarely
empty check box Sometimes
empty check box Often
empty check box Always


Date completed: MONTH      / DAY      / YEAR         

Thank you for completing this survey. Please place this survey in the envelope provided to you and give it to the MEPS interviewing team member.

If the interviewer is no longer available, place the survey in the return envelope provided to you by the interviewer. If the envelope is missing, mail this survey to:

MEPS
c/o Westat
1600 Research Blvd, Room GA51
Rockville, MD 20850

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