MEPS Home Medical Expenditure Panel Survey
Font Size:
Contact MEPS FAQ Site Map  
S
M
L
XL
 

OMB #0935-0118
Expiration Date 01/31/2013

Medical Expenditure Panel Survey (MEPS)

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).

The person named in the box below should complete this survey:

NAME: ________________________
_______________________________
DOB (month/day/year): __________ PID: __________
RUID: _________________________

When you have completed the survey, please fold it, seal it with this label, and place it in the envelope provided.

Complete your survey now, by continuing to the next page.

Your responses will be kept confidential to the extent permitted by law, including AHRQís 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, 540 Gaither Road, Room #5036, Rockville, MD 20850


Department of Health and Human Services (DHHS) 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 marked with an X 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 8.
  empty check box No.   

4. To the best of your knowledge, are you now free of cancer?
  empty check box Yes.
  empty check box No.
  empty check box I don't know.

5. 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 less than 20 years ago.
  empty check box More than 20 years ago.
  empty check box I have not been treated for cancer.

6. 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, page 2.

7. What was the most recent year a doctor or health professional told you that your cancer had come back?
  (enter year)  Go to Section 2, page 2.

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

Continue with Section 2, page 2.

Section 2. Changes to Your Work Schedule

9. 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 47, page 6.

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.


10. 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.  Go to Question 13.
  empty check box No. 

11. At any time since your first cancer diagnosis, did you ask for extended paid time off from work, unpaid time off, or a change in your hours, duties or employment status?
  empty check box Yes. 
  empty check box No.  Go to Question 36, page 4.

12. Did you ask for these work changesÖ
  empty check box Because of your cancer, its treatment or its lasting effects?  Go to Question 36, page 4.
  empty check box Some other reason?  Go to Question 36, page 4.

13. Did you make these work changesÖ
  empty check box Because of your cancer, its treatment or its lasting effects? 
  empty check box Some other reason?  Go to Question 36, page 4.

14. 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 18, page 3.

15. When did you take extended paid time off from work?
  Mark sample check box marked with an X 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.

16. What do you estimate was the total amount of extended paid time off from work that you took?
  empty check box Less than 2 months.
  empty check box 2 months to less than 6 months.
  empty check box 6 months to less than 1 year.
  empty check box 1 year to 3 years.
  empty check box More than 3 years.

17. Is your extended paid time off from work ongoing?
  empty check box Yes. 
  empty check box No. 

18. Did you ever take unpaid time off from work?
  empty check box Yes. 
  empty check box No.  Go to Question 22.

19. When did you take unpaid time off from work?
  Mark sample check box marked with an X 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.

20. What do you estimate was the total amount of unpaid time off from work that you took?
  empty check box Less than 2 months.
  empty check box 2 months to less than 6 months.
  empty check box 6 months to less than 1 year.
  empty check box 1 year to 3 years.
  empty check box More than 3 years.

21. Is your unpaid time off ongoing?
  empty check box Yes. 
  empty check box No. 

22. Did you ever change from working part-time to working full-time?
  empty check box Yes. 
  empty check box No.  Go to Question 26.

23. When did you change from working part-time to working full-time?
  Mark sample check box marked with an X 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.

24. What do you estimate was the total amount of time you worked full-time?
  empty check box Less than 2 months.
  empty check box 2 months to less than 6 months.
  empty check box 6 months to less than 1 year.
  empty check box 1 year to 3 years.
  empty check box More than 3 years.

25. Is this change ongoing?
  empty check box Yes. 
  empty check box No. 

26. Did you ever change from working full-time to working part-time?
  empty check box Yes. 
  empty check box No.  Go to Question 30, page 4.

27. When did you change from working full-time to working part-time?
  Mark sample check box marked with an X 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.

28. What do you estimate was the total amount of time you worked part-time?
  empty check box Less than 2 months.
  empty check box 2 months to less than 6 months.
  empty check box 6 months to less than 1 year.
  empty check box 1 year to 3 years.
  empty check box More than 3 years.

29. Is this change ongoing?
  empty check box Yes. 
  empty check box No. 

30. 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.  Go to Question 32.

31. When did you change to a flexible work schedule?
  Mark sample check box marked with an X 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.

32. Did you ever change to a less demanding job?
  empty check box Yes. 
  empty check box No.  Go to Question 36.

33. When did you change to a less demanding job?
  Mark sample check box marked with an X 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.

34. How long did you stay in the less demanding job?
  empty check box Less than 2 months.
  empty check box 2 months to less than 6 months.
  empty check box 6 months to less than 1 year.
  empty check box 1 year to 3 years.
  empty check box More than 3 years.

35. Is this change ongoing?
  empty check box Yes. 
  empty check box No. 

36. Did you make any other type of work arrangements because of your cancer, its treatment, or the lasting effects of that treatment?
  empty check box Yes.  Please describe.
  empty check box No.  Go to Question 37, page 5.

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

38. Because of your cancer, its treatment, or the lasting effects of that treatment, did you retire earlier than you had planned?
  empty check box Yes.  Go to Section 3.
  empty check box No. 

39. Because of your cancer, its treatment, or the lasting effects of that treatment, did you delay retirement beyond when you had planned?
  empty check box Yes. 
  empty check box No. 

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.

40. 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. 

41. 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. 

42. 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. 

43. 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. 

44. 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 46.

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

46. Thinking about your work life or career, what effect has your experience with cancer, its treatment, or the lasting effects of that treatment had on it?
  empty check box Mostly positive effect. 
  empty check box Mostly negative effect. 
  empty check box Equally positive and negative effect. 
  empty check box Neither positive nor negative effect. 

47. 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. 

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.

48. 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, page 8.

49. 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.  Go to Question 50, page 7.
  empty check box No.  Go to Question 63, page 8.
  empty check box None of my caregivers were employed while caring for me.  Go to Section 5, page 8.
  empty check box I don’t know.  Go to Question 63, page 8.

50. 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.  Go to Question 63, page 8.

51. Did any of your caregivers take extended paid time off from work (vacation and/or sick time)?
  empty check box Yes. 
  empty check box No.  Go to Question 54.

52. How long do you estimate this caregiver took extended paid time off from work?
  empty check box 2 months to less than 6 months.
  empty check box 6 months to less than 1 year.
  empty check box 1 year to 3 years.
  empty check box More than 3 years.

53. Is this caregiverís extended paid time off from work ongoing?
  empty check box Yes. 
  empty check box No. 

54. Did any of your caregivers take unpaid time off from work?
  empty check box Yes. 
  empty check box No.  Go to Question 57.

55. How long do you estimate this care- giver took unpaid time off from work?
  empty check box 2 months to less than 6 months.
  empty check box 6 months to less than 1 year.
  empty check box 1 year to 3 years.
  empty check box More than 3 years.

56. Is this caregiverís unpaid time off ongoing?
  empty check box Yes. 
  empty check box No. 

57. Did any of your caregivers change from working part-time to working full-time?
  empty check box Yes. 
  empty check box No.  Go to Question 60.

58. How long do you estimate this caregiver worked full-time?
  empty check box 2 months to less than 6 months.
  empty check box 6 months to less than 1 year.
  empty check box 1 year to 3 years.
  empty check box More than 3 years.

59. Is this change ongoing?
  empty check box Yes. 
  empty check box No. 

60. Did any of your caregivers change from working full-time to working part-time?
  empty check box Yes. 
  empty check box No.  Go to Question 63, page 8.

61. How long do you estimate this caregiver worked part-time?
  empty check box 2 months to less than 6 months.
  empty check box 6 months to less than 1 year.
  empty check box 1 year to 3 years.
  empty check box More than 3 years.

62. Is this change ongoing?
  empty check box Yes. 
  empty check box No. 

63. Did any of your caregivers make any other type of work arrangements because of your cancer, its treatment, or the lasting effects of that treatment?
  empty check box Yes.  Please describe.
  empty check box No.  Go to Question 64.
  empty check box I don’t know.  Go to Question 64.

64. Because of your cancer, its treatment, or the lasting effects of that treatment, did any of your caregivers change to a less demanding job?
  empty check box Yes. 
  empty check box No. 
  empty check box I don’t know. 

65. Because of your cancer, its treatment, or the lasting effects of that treatment, did any of your caregivers retire early?
  empty check box Yes. 
  empty check box No. 
  empty check box I don’t know. 

66. Because of your cancer, its treatment, or the lasting effects of that treatment, did any of your caregivers delay retirement?
  empty check box Yes. 
  empty check box No. 
  empty check box I don’t know. 

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.

67. 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 Question 70.
  empty check box I don’t know.  Go to Question 70.

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

69. Was there ever a time when health insurance refused to cover a second opinion about your cancer?
  empty check box Yes. 
  empty check box No. 
  empty check box I never asked for a second opinion. 

70. Were you ever denied health insurance coverage because of your cancer?
  empty check box Yes. 
  empty check box No. 
  empty check box I never applied for health insurance. 

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.

71. 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 74.

72. 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 $100,000 or more

73. 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. 

74. 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?
  empty check box Yes.  Please describe.
  empty check box No.  Go to Question 75.

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

76. 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. 

Continue with Section 7, page 10.

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.

77. 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 donít 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 donít 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 donít 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 donít remember.

78. 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, page 11.
  empty check box No. 

79. 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 marked with an X 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
  i. Other reason empty check box empty check box

If you answered “Yes” to only one reason in Question 79, GO TO Section 8 on page 11. Otherwise continue with Question 80, on page 11.

80. When did you change to a less demanding job?
  Mark sample check box marked with an X one only.
  empty check box Couldn’t afford care
  empty check box Insurance company wouldn’t approve or pay for care
  empty check box Doctor did not accept your insurance
  empty check box Had problems getting to doctor’s office
  empty check box Couldn’t get time off from work
  empty check box Didn’t know where to go to get care
  empty check box Couldn’t get child care/adult care
  empty check box Didn’t have time, care/test/treatment took too long
  empty check box Some other reason. Please describe.

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.

81. 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 84.

82. 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.

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

84. 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. 

85. Have you ever asked for help getting to a doctor or other healthcare provider because of your cancer, its treatment, or the lasting effects of that treatment?
  empty check box Yes. 
  empty check box No.  Go to Question 87.

86. Did you ever receive help getting to a doctor or other healthcare provider?
  empty check box Yes. 
  empty check box No. 

87. Have you ever asked for help 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.  Go to Question 89.

88. Did you ever receive help understanding health insurance or medical bills?
  empty check box Yes. 
  empty check box No. 

89. How often do you worry that your cancer may come back or get worse?
  empty check box Never  Go to Question 91.
  empty check box Rarely 
  empty check box Sometimes 
  empty check box Often 
  empty check box All the time 

90. How often do you worry that if your cancer came back or got worse it might keep you from fulfilling responsibilities at home or at work?
  empty check box Never 
  empty check box Rarely 
  empty check box Sometimes 
  empty check box Often 
  empty check box All the time 

91. In your own opinion, what do you think are the chances that your cancer will come back or get worse within the next 10 years?
  empty check box Very low
  empty check box Fairly low 
  empty check box Moderate 
  empty check box Fairly high 
  empty check box Very high 
  empty check box I don’t know 

92. 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 marked with an X 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

93. Please use the space below to tell us anything else about your experiences with cancer
  ______________________________________________________________ 

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

Back to top.

Back to topGo back to top
AHRQ
Get Social
Agency for Healthcare Research and Quality
5600 Fishers Lane
Rockville, MD 20857
Telephone: (301) 427-1364
Improving the Quality, Safety, Efficiency, and Effectiveness of Health Care For All Americans