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OMB #: 0935-0118
Exp. Date: 1/31/2013
Your Experiences with Cancer
°
l This survey is about the lasting effects of cancer and cancer treatments on the lives of those who have been
diagnosed with cancer.
°
l 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.
°
l 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).
°
l The person named in the box below should complete this survey:
DOB:
/
/
MONTH DAY
YEAR
PID:
RUID:
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l When you have completed this survey, fold it, then seal with this label
and place it in the envelope provided.
°
l Complete your survey now, by continuing to the next page.
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, 540 Gaither Road, Room #5036, Rockville, MD 20850.
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
Attach label here (see back➔cover) ➔
NAME:
41670
Section 1. Cancer History
5. About how long ago did you receive
your last cancer treatment?
t
This first section asks about your cancer
history.
t
Answer each question by marking n
7
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?
Yes
No
Yes
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?
Yes ➔ GO TO Question 8
No
1 year ago to less than 3 years ago
3 years ago to less than 5 years ago
5 years ago to less than 10 years ago
10 years ago to 20 years ago
More than 20 years ago
I have not been treated for cancer
Yes
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?
lease stop. Thank you
P
for your time. This survey
is complete.
Less than 1 year ago
6. Did a doctor or other health
professional ever tell you that your
cancer had come back?
lease stop. Thank you
P
for your time. This survey
is complete.
2. Was your only cancer diagnosis or
treatment before the age of 18?
➔ GO TO Section 2, page 2
YEAR
8. Is this the first time you have been
treated for any type of cancer?
Yes
No
t
Continue with Section 2, page 2.
4. To the best of your knowledge, are you
now free of cancer?
Yes
No
I don’t know
1
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Section 2. Changes to Your
Work Schedule
12. Did you ask for these work changes…
9. At any time from when you were first
diagnosed with cancer until now,
were you working for pay at a job or
business?
13. Did you make these work changes…
Yes
No ➔ GO TO Question 47, page 6
Because of your
cancer, its treatment
or its lasting effects?
Some other reason?
➔ GO TO Question 36, page 4
t
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.
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.
t
As you answer these questions, please think
about the entire time from when you were
first diagnosed with cancer to now.
t
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.
Yes ➔ GO TO Question 13
No
Yes
No ➔ GO TO Question 18, page 3
15. When did you take extended paid time
off from work?
Mark n
7 all that apply.
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?
}
Because of your
cancer, its treatment GO TO
or its lasting effects? Question 36,
page 4
Some other reason?
At the time of diagnosis
During treatment
Less than one year after treatment was
finished
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?
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?
Less than 2 months
Yes
2 months to less than 6 months
No ➔ GO TO Question 36, page 4
6 months to less than 1 year
1 year to 3 years
More than 3 years
2
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17. Is your extended paid time off from
work ongoing?
Yes
No
23. When did you change from working
part-time to working full-time?
Mark n
7 all that apply.
18. Did you ever take unpaid time off from
work?
Yes
No ➔ GO TO Question 22
19. When did you take unpaid time off
from work?
At the time of diagnosis
During treatment
Less than one year after treatment was
finished
One year or more after treatment was
finished
Less than 2 months
2 months to less than 6 months
6 months to less than 1 year
1 year to 3 years
More than 3 years
Yes
No
Yes
No ➔ GO TO Question 26
Less than one year after treatment was
finished
One year or more after treatment was
finished
Less than 2 months
2 months to less than 6 months
6 months to less than 1 year
1 year to 3 years
More than 3 years
Yes
No
Yes
No ➔ GO TO Question 30, page 4
27. When did you change from working
full-time to working part-time?
Mark n
7 all that apply.
22. Did you ever change from working
part-time to working full-time?
During treatment
26. Did you ever change from working fulltime to working part-time?
21. Is your unpaid time off ongoing?
25. Is this change ongoing?
20. What do you estimate was the total
amount of unpaid time off from work that
you took?
At the time of diagnosis
24. What do you estimate was the total
amount of time you worked full-time?
Mark n
7 all that apply.
3
At the time of diagnosis
During treatment
Less than one year after treatment was
finished
One year or more after treatment was
finished
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33. When did you change to a less
demanding job?
28. What do you estimate was the total
amount of time you worked part-time?
Less than 2 months
Mark n
7 all that apply.
2 months to less than 6 months
At the time of diagnosis
6 months to less than 1 year
During treatment
1 year to 3 years
More than 3 years
Less than one year after treatment was
finished
One year or more after treatment was
finished
29. Is this change ongoing?
Yes
No
34. How long did you stay in the less
demanding job?
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?
Yes
No ➔ GO TO Question 32
Mark n
7 all that apply.
At the time of diagnosis
During treatment
Less than one year after treatment was
finished
One year or more after treatment was
finished
Less than 2 months
2 months to less than 6 months
6 months to less than 1 year
1 year to 3 years
More than 3 years
35. Is this change ongoing?
31. When did you change to a flexible
work schedule?
Yes
No
36. Did you make any other type of work
arrangements because of your cancer,
its treatment, or the lasting effects of
that treatment?
Yes
No ➔ GO TO Question 37, page 5
32. Did you ever change to a less
demanding job?
Yes
No ➔ GO TO Question 36
4
Please describe:
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Section 3. Other Aspects
of Work
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?
Yes
No
Please continue to think about all your work
experiences from the time you were first
diagnosed with cancer to now.
t
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.
Yes ➔ GO TO Section 3
No
t
38. B
ecause of your cancer, its treatment, or
the lasting effects of that treatment, did
you retire earlier than you had planned?
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?
39. B
ecause of your cancer, its treatment,
or the lasting effects of that treatment,
did you delay retirement beyond when
you had planned?
Yes
No
Yes
No
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?
Yes
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?
5
Yes
No
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Section 4. Caregivers
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?
Yes
No
t
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.
44. Did you ever stay at a job in part
because you were concerned about
losing your health insurance?
Yes
No ➔ GO TO Question 46
t
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.
t
Please continue to think about the time you
were first diagnosed with cancer to now.
45. Were you concerned about losing your
health insurance because of your
cancer?
Yes
No
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?
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?
Mostly positive effect
Mostly negative effect
Equally positive and negative effect
Neither positive nor negative effect
Yes
No
Does not apply
Yes
No ➔ GO TO Section 5, page 8
49. 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?
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?
Yes
No ➔ GO TO Question 63, page 8
None of my caregivers were employed
while caring for me
➔ GO TO Section 5, page 8
I don’t know
➔ GO TO Question 63, page 8
GO TO Question 50, page 7
6
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56. Is this caregiver’s unpaid time
off ongoing?
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?
Yes
No ➔ GO TO Question 63, page 8
Yes
No ➔ GO TO Question 54
2 months to less than 6 months
6 months to less than 1 year
1 year to 3 years
More than 3 years
Yes
No
Yes
No ➔ GO TO Question 57
2 months to less than 6 months
6 months to less than 1 year
1 year to 3 years
More than 3 years
Yes
No ➔ GO TO Question 60
2 months to less than 6 months
6 months to less than 1 year
1 year to 3 years
More than 3 years
Yes
No
Yes
No ➔ GO TO Question 63, page 8
61. How long do you estimate this
caregiver worked part-time?
55. How long do you estimate this caregiver took unpaid time off from work?
60. Did any of your caregivers change
from working full-time to working parttime?
54. Did any of your caregivers take unpaid
time off from work?
No
59. Is this change ongoing?
53. Is this caregiver’s extended paid time
off from work ongoing?
58. How long do you estimate this
caregiver worked full-time?
52. How long do you estimate this caregiver
took extended paid time off from work?
Yes
57. D
id any of your caregivers change from
working part-time to working full-time?
51. Did any of your caregivers take
extended paid time off from work
(vacation and/or sick time)?
2 months to less than 6 months
6 months to less than 1 year
1 year to 3 years
More than 3 years
62. Is this change ongoing?
7
Yes
No
41670
Section 5. Experiences with
Health Insurance
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?
Yes
No
I don’t know
Please describe:
}
t
GO TO Question 64
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.
t
The next few questions are about health
insurance coverage from the time you were
first diagnosed with cancer to now.
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?
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?
Yes
No
I don’t know
Yes
No
I don’t know
Yes
No
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?
65. Because of your cancer, its treatment,
or the lasting effects of that treatment,
did any of your caregivers retire early?
Yes
No
Does not apply
69. Was there ever a time when health
insurance refused to cover a second
opinion about your cancer?
Yes
No
66. Because of your cancer, its treatment,
or the lasting effects of that treatment,
did any of your caregivers delay
retirement?
I never asked for a second opinion
Yes
Yes
No
No
I don’t know
I never applied for health insurance
70. Were you ever denied health insurance
coverage because of your cancer?
8
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Section 6. The Effects of
Cancer and Its Treatment
on Finances
73. Did you or your family ever file for
bankruptcy because of your cancer, its
treatment, or the lasting effects of that
treatment?
t
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.
Yes
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?
t
Please continue to think about all the time
from when you were first diagnosed with
cancer to now.
t
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.
Yes
No ➔ GO TO Question 75
Please describe:
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?
Yes
No ➔ GO TO Question 74
75. Have you ever worried about having to
pay large medical bills related to your
cancer?
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?
Less than $10,000
$10,000 to $24,999
$25,000 to $49,999
$50,000 to $74,999
$75,000 to $99,999
$100,000 or more
Yes
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?
Yes
No
Continue with Section 7, page 10.
t
9
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Section 7. Medical Care
for Cancer
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?
t
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.
t
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.
Yes ➔ GO TO Section 8, page 11
No
Mark n
7 yes or no for
each item below.
a. The need for regular follow-up
care and monitoring even after
completing your treatment?
a. Couldn’t afford care . . . . . . . . . . .
b. Insurance company
wouldn’t approve or pay
for care. . . . . . . . . . . . . . . . . . . . . . . . . . . . .
c. Doctor did not accept
your insurance. . . . . . . . . . . . . . . . . . .
d. Had problems getting to
doctor’s office . . . . . . . . . . . . . . . . . . .
e. Couldn’t get time off
from work. . . . . . . . . . . . . . . . . . . . . . . . . .
f. Didn’t know where to go
to get care. . . . . . . . . . . . . . . . . . . . . . . . .
g. Couldn’t get child
care/adult care. . . . . . . . . . . . . . . . . .
h. Didn’t have time, care/
test/treatment took
too long. . . . . . . . . . . . . . . . . . . . . . . . . . . . .
i. Other reason . . . . . . . . . . . . . . . . . . . . .
Discussed it with me in detail
Briefly discussed it with me
Did not discuss it at all
I don’t remember
b. Late or long-term side effects
of cancer treatment you may
experience over time?
Discussed it with me in detail
Briefly discussed it with me
Did not discuss it at all
I don’t remember
c. Your emotional or social needs related
to your cancer, its treatment, or the
lasting effects of that treatment?
ot
, n on
Noreas
a
s, n
Ye aso
re
a
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?
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...
Discussed it with me in detail
!
Briefly discussed it with me
Did not discuss it at all
I don’t remember
d. Lifestyle or health recommendations
such as diet, exercise, quitting smoking?
Discussed it with me in detail
Briefly discussed it with me
Did not discuss it at all
I don’t remember
10
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.
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Section 8. The Effects of
Cancer and Its Treatment
on Life in General
80. Which one of these is the main reason
that you did not get all of the medical
care, tests, or treatments you or a
doctor believed you needed?
Mark n
7 ONE only.
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.
t
Couldn’t afford care
Insurance company wouldn’t approve
or pay for care
Doctor didn’t accept your insurance
Had problems getting to the doctors’
office
Couldn’t get time off from work
Didn’t know where to go to get care
Couldn’t get child care/adult care
Didn’t have time, care/test/treatment
took too long
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.
t
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?
Some other reason.
Please describe:
Yes
No ➔ GO TO Question 84
82. How long were you or have you been
limited in the kind or amount of usual
daily activities?
Less than 6 months
6 months to less than 1 year
1 year to less than 3 years
3 years to less than 5 years
5 years to less than 10 years
More than 10 years
83. Is this limitation ongoing?
Yes
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?
11
Yes
No
41670
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?
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?
Yes
Very low
No ➔ GO TO Question 87
Fairly low
Moderate
Fairly high
86. Did you ever receive help getting to a
doctor or other healthcare provider?
Yes
Very high
No
I don’t know
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?
Yes
No ➔ GO TO Question 89
88. Did you ever receive help understanding health insurance or medical bills?
Yes
No
89. How often do you worry that your
cancer may come back or get worse?
}
92. H
ave any of the following been positive
things about your experiences with
your cancer, its treatment, or the
lasting effects of that treatment?
Mark n
7 yes or no for each item below.
a. It has made me a
stronger person. . . . . . . . . . . . . . . . .
b. I can cope better with
life’s challenges. . . . . . . . . . . . . . . . .
c. It became a reason to make
positive changes in my life.
d. It has made me have
healthier habits . . . . . . . . . . . . . . . . .
Never ➔ GO TO Question 91
Rarely
93. Please use the space below to tell us
anything else about your experiences
with cancer.
Sometimes
Often
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?
Never
Rarely
Sometimes
Often
All the time
Yes No
12
t
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.
t
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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31822.1111.85770107
12-229
| File Type | application/pdf |
| File Modified | 2012-01-06 |
| File Created | 2012-01-06 |