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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: |
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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.
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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  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? |
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Yes |
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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? |
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Yes [Please stop. Thank you for your time. This survey is complete.] |
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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? |
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Yes GO TO Question 7 |
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No |
5. |
Did a doctor or other health professional ever tell you that your cancer had come back? |
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Yes |
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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 |
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GO TO Section 2 |
7. |
Is this the first time you have been treated for any type of cancer? |
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Yes |
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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? |
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Yes |
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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? |
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Yes |
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No GO TO Question 15 |
10. |
Did you make these work changes... |
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Because of your cancer, its treatment or its lasting effects? |
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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. |
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Yes |
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No GO TO Question 13 |
13. |
Did you ever change from working full-time to working part-time or change to a less demanding job? |
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Yes |
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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? |
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Yes |
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No |
15. |
Because of your cancer, its treatment, or its lasting effects, did you ever decide not to pursue an advancement or promotion? |
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Yes |
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No |
16. |
Because of your cancer, its treatment, or its lasting effects, did you retire earlier than you had planned? |
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Yes |
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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.
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? |
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Yes |
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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? |
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Yes |
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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? |
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Yes |
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No |
21. |
Did you ever stay at a job in part because you were concerned about losing your health insurance? |
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Yes |
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No GO TO Question 23 |
22. |
Were you concerned about losing your health insurance because of your cancer? |
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Yes |
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No |
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? |
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Yes |
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No GO TO Section 5 |
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.
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.
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? |
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Yes |
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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? |
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Less than $10,000 |
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$10,000 to $24,999 |
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$25,000 to $49,999 |
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$50,000 to $74,999 |
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$75,000 to $99,999 |
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$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 all that apply. |
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Reduced spending on vacation or leisure activities |
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Delayed large purchases (e.g., car) |
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Reduced spending on basics (e.g., food and clothing) |
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Used savings set aside for other purposes (e.g., retirement, educational funds, family support) |
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Made a change to living situation (e.g., sold, refinanced, or moved to a smaller residence) |
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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? |
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Yes |
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No |
40. |
Did you or your family ever file for bankruptcy because of your cancer, its treatment, or the lasting effects of that treatment? |
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Yes |
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No |
41. |
Have you ever worried about having to pay large medical bills related to your cancer? |
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Yes |
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No |
42. |
Have you ever worried about your family’s financial stability because of your cancer, its treatment or lasting effects of that treatment? |
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Yes |
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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? |
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Yes |
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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.
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? |
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Yes GO TO Section 8 |
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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 yes or no for each item below. |
Yes, a reason |
No, not a reason |
a. |
Couldn’t afford care |
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b. |
Insurance company wouldn't approve or pay for care |
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c. |
Doctor did not accept your insurance |
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d. |
Had problems getting to doctor's office |
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e. |
Couldn't get time off from work |
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f. |
Didn't know where to go to get care |
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g. |
Couldn't get child care/adult care |
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h. |
Didn't have time, care/ test/treatment took too long |
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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? |
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Yes |
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No GO TO Question 51 |
50. |
Is this limitation ongoing? |
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Yes |
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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? |
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Yes |
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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? |
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Yes |
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No |
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 yes or no for each item below. |
Yes |
No |
a. |
It has made me a stronger person |
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b. |
I can cope better with life's challenges |
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c. |
It became a reason to make positive changes in my life |
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d. |
It has made me have healthier habits |
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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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