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Form Approved
OMB# 0935-0118
Exp. Date 9/30/2026

2024

Your Experiences with Cancer

Your opinion matters!

Medical Expenditure Panel Survey (MEPS)

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, and life in general. The goal of this survey is to help improve experiences of people diagnosed with cancer in the future.

Survey Instructions

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 as required by law. If you have any questions about how to complete this booklet, please call Alex Scott at 1-800-945-MEPS (6377).
Answer each question by marking your response or filling in a number when necessary. If you are unsure about how to answer a question, please give the best answer you can.
You may skip any questions you do not wish to answer or to stop taking the survey at any time.

This Booklet Should Be Completed By

RUID: PID:

NAME:

DOB:

This survey is authorized under 42 U.S.C. 299a. Privacy is protected by the Privacy Act and Section 308(d) of the Public Health Service Act [42 U.S.C. 299c-3(c) and 42 U.S.C. 242m(d)]. The confidentiality of your responses to this survey is protected by Section 944(c) of the Public Health Service Act. Information that could identify you will not be disclosed unless you have consented to that disclosure. 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. This information collection is voluntary. The data you provide will help AHRQ’s mission to produce evidence to make health care safer, higher quality, more accessible, equitable, and affordable. 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 (OMB control number 0935-0118) AHRQ, 5600 Fishers Lane, Room #07W42, Rockville, MD 20857 or by email at REPORTSCLEARANCEOFFICER@ahrq.hhs.gov.

Department of Health and Human Services (DHHS)

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

Section 1. Cancer History
Section 2. Impacts on Work
Section 3. The Effects of Cancer and Its Treatment on Finances
Section 4. Medical Care for Cancer
Section 5. The Effects of Cancer and Its Treatment on Life in General

Section 1. Cancer History

This first section asks about your cancer history.

Have you ever been told by a doctor or other health professional that you had cancer or a malignancy of any kind?

Yes

No Please stop here and go to the back page to complete this survey, then follow the return instructions.

Was your only cancer diagnosis or treatment before the age of 18?

Yes Please stop here and go to the back page to complete this survey, then follow the return instructions.

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 7

About how long ago did you receive your last cancer treatment?

Less than 1 year ago

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

Did a doctor or other health professional ever tell you that your cancer had come back?

Yes

No GO TO Section 2

GO TO Question 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

Is this the first time you have ever been treated for cancer?

Yes

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Section 2. Impacts on Work

At any time from when you were first diagnosed with cancer until now, were you working for pay at a job or business (including being self-employed)?

Yes

No GO TO Question 18

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.

Because of your cancer, its treatment, or its lasting effects, at any time since your first cancer diagnosis:
Mark

yes or no for each item below.

Yes

Did you ever take extended (more than an occasional day off here and there) paid leave (vacation, sick leave, or disability leave) from work?

Did you ever take extended unpaid leave from work (including taking Family Medical Leave)?

Did you ever change from working full-time to working part-time or change to a less demanding job?

Did you ever quit your job (leave your job and plan to find another job at some point)?

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?

10.

Because of your cancer, its treatment, or its lasting effects, at any time since your first cancer diagnosis:
Mark

yes or no for each item below.

Yes

Did you ever decide not to pursue an advancement or promotion?

Did you retire earlier than you had planned?

Did you delay retirement beyond when you had planned?

11.

Did or does your cancer, its treatment, or its lasting effects limit the kind or amount of paid work you could do?

Yes

12.

Because of your cancer, its treatment, or its lasting effects, did any of your employers do anything to help you out so that you can continue working?
Mark

all that apply.

Get someone to help you with your work duties

Shorten your work days

Allow you to change the time you came to and left work

Allow you more breaks and rest periods

Change the job to something you could do

Help you learn new skills or get you special equipment or a computer for the job

Assist you in receiving rehabilitative services from an external provider

Allow you to work from home

Any other things to help you out

I did not need help from my employer

My employers didn’t offer me any help

Not applicable

13.

Because of your cancer, its treatment, or its lasting effects, did you ask any of your employers for help to do your job that you did NOT receive?

Yes

No, because I didn’t need any help from my employer

No, because I received all the help I needed

No, but I would have liked to get help (or more help) from my employer

Not applicable

14.

Because of your cancer, its treatment, or its lasting effects, at any time since your first cancer diagnosis, have you experienced any of the following?
Mark

all that apply.

Had job hours or wages reduced without your request

Was let go, laid off, or fired from a job

Was passed over for a promotion or job advancement

Was assigned job duties or to a job location you didn’t want

Not applicable / None of the above

15.

Did you ever feel that, because of your cancer, its treatment, or the lasting effects of that treatment, you were less productive at work?

Yes

16.

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

17.

Did you ever stay at a job in part because you were concerned about losing your health insurance?

Yes

18.

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?

Yes

No spouse / significant other

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Section 3. 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.

19.

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

all that apply.

Medical expenses (e.g., medications, medical equipment or supplies)

Transportation

Lodging

Child care

Home or respite care

I had no out-of-pocket costs

I am not sure

20.

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 22

21.

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

22.

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.

Reduced spending on vacation or leisure activities

Delayed large purchases (e.g., car)

Reduced spending on basics (e.g., food and clothing)

Used savings set aside for other purposes (e.g., retirement, educational funds, family support)

Made a change to living situation (e.g., sold, refinanced, or moved to a smaller residence)

Other

23.

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

24.

Have you ever worried about having to pay large medical bills related to your cancer?

Yes

25.

Have you ever worried about your family’s financial stability because of your cancer, its treatment or lasting effects of that treatment?

Yes

26.

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?

Yes

27.

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

all that apply.

Prescription medicine

Visit to specialist

Treatment (other than prescription medicine)

Follow up care

Mental health services

Other

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Section 4. 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.

28.

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...

Your emotional or social needs related to your cancer, its treatment, or the lasting effects of that treatment?

Discussed it with me in detail