Caregiver Survey_paper_English

Form approved

OMB # 0920-####

Exp. date MM/DD/YYYY

Attachment 4b.

Caregiver Survey (paper, English)

CDC APHIR Barriers Along Cancer Continuum – Caregiver Survey

Preload variables: [Do not need to translate these variables]

• RTI_ID

• PATIENT_ID_LINK (To link caregiver to original patient)

• CANC_TYPE (breast/cervical/colorectal)

• STATE

Intro.

Thank you for agreeing to participate in this study. This survey will take you about 15 minutes to complete. After you submit the survey, you will receive a $40 check or electronic gift card as a token of appreciation for your time.

One goal of this study is to collect information about your experience as a caregiver for someone who was diagnosed with cancer. We are also interested in learning about any barriers your care recipient may have faced during their treatment.

This survey includes questions on several topics. For example, you will be asked about where you live, your health, and how caregiving has impacted you. Some of these questions ask you to think back to events that may have occurred a few years ago.

Although the answers may be hard to remember, please do the best you can. There are no right or wrong answers to any of these questions. You should just report what you have been through as a caregiver.

Participation in this study is voluntary. Questions answered in this study will not affect your health care. There are protections in place to keep your data confidential and private. You can skip any question you do not want to answer. Just go on to the next question. You may exit the survey at any time. You may also complete the survey in multiple sittings; your answers will be saved. Joining this study has minimal risks. Some of the questions on the survey may be upsetting, but you don’t have to answer them. Protections are in place to keep your data as safe as possible.

{PAGE BREAK}

MODULE A: DEMOGRAPHICS

A1. How old are you?

1. Under 18 years old [GOTO TERMINATE]

2. 18–20 years old

3. 21-24 years old

4. 25–29 years old

5. 30–34 years old

6. 35–39 years old

7. 40–44 years old

8. 45–49 years old

9. 50–54 years old

10. 55–59 years old

11. 60–64 years old

12. 65–69 years old

13. 70–74 years old

14. 75 years old or older

{PAGE BREAK}

A3. What is your relationship to the individual, who was diagnosed with [CANC_TYPE] cancer in 2021? They are your:

1. spouse (husband/wife)

2. domestic partner

3. child

4. parent

5. sibling

6. friend

7. Other – Please specify: [OPEN FIELD]

{PAGE BREAK}

For the rest of the survey, we will refer to the individual to whom you provided care during their cancer treatment as a “care recipient.”

A4. Do you live in the same household with the care recipient?

1. Yes

2. No

{PAGE BREAK}

A5. What is your biological sex? This is a category that is based upon your original birth certificate.

1. Male

2. Female

3. Prefer not to answer

{PAGE BREAK}

A6. What ethnicity do you identify as?

1. Hispanic or Latino

2. Not Hispanic or Latino

99. Prefer not to answer

A7. What race do you identify as? Select all that apply.

1. American Indian or Alaska Native

2. Asian

3. Black or African American

4. Native Hawaiian or Other Pacific Islander

5. White

6. Multiracial

7. Other - please specify: [OPEN FIELD]

99. Prefer not to answer

{PAGE BREAK}

A8_A. What was your marital status when the care recipient was first diagnosed?

1. Never married

2. Married

3. Living together with a partner as an unmarried couple / cohabitating

4. Widowed

5. Separated or divorced

A8_B. What is your current marital status?

1. Never married

2. Married

3. Living together with a partner as an unmarried couple / cohabitating

4. Widowed

5. Separated or divorced

{PAGE BREAK}

A9_A. What was your employment status when the care recipient was first diagnosed?

1. Employed for pay (including self-employed) – 40 hours or more per week

2. Employed for pay (including self-employed) – Less than 40 hours per week

3. Retired

4. Homemaker

5. Student

6. Out of work

7. Unable to work (e.g., due to disability, work authorization)

A9_B. What is your current employment status?

1. Employed for pay (including self-employed) – 40 hours or more per week

2. Employed for pay (including self-employed) – Less than 40 hours per week

3. Retired

4. Homemaker

5. Student

6. Out of work

7. Unable to work (e.g., due to disability, work authorization)

{PAGE BREAK}

A10. What was your total household income in 2021?

1. Less than $20,000

2. $20,001–$40,000

3. $40,001–$60,000

4. $60,001–$80,000

5. $80,001–$100,000

6. $100,001–$120,000

7. More than $120,000

{PAGE BREAK}

A11_A. What was your health insurance status when the care recipient was first diagnosed? Please select all that apply.

1. No insurance

2. Lapse in coverage

3. Private health insurance (purchased on your own or from your job or from your spouse’s / partner’s / parent’s job)

4. Medicaid

5. Medicare/Medicare Advantage

6. Military (Tricare, Champ-VA, or some other military insurance)

7. Other [please specify]: [OPEN FIELD IF SELECTED]

A11_B. What is your current health insurance status? Please select all that apply.

1. No insurance

2. Lapse in coverage

3. Private health insurance (purchased on your own or from your job or from your spouse’s / partner’s / parent’s job)

4. Medicaid

5. Medicare/Medicare Advantage

6. Military (Tricare, Champ-VA, or some other military insurance)

7. Other [please specify]: [OPEN FIELD IF SELECTED]

{PAGE BREAK}

A12. What is the highest level of school that you completed?

1. Elementary or middle school

2. 9th –12th grade but not a high school graduate

3. High school graduate or GED

4. Some college / technical school

5. College graduate

6. Post-graduate or professional degree

{PAGE BREAK}

A13. [NUMERIC] What was your zip code during the care recipient’s cancer treatment? Please enter a 5-digit zip code.

[OPEN – ALLOW 5-DIGIT ZIP CODE]

777777. I lived in multiple zip codes during the care recipient ’s cancer treatment.

888888. Don’t know

A13_SPEC: [SHOW IF A13=777777] Please enter the zip codes where you lived during the care recipient’s cancer treatment. Please enter 5-digit zip codes.

1. [OPEN – ALLOW 5-DIGIT ZIP CODE]

2. [OPEN – ALLOW 5-DIGIT ZIP CODE]

3. [OPEN – ALLOW 5-DIGIT ZIP CODE]

{PAGE BREAK}

A14. Which best describes your home during your time as a caregiver to the care recipient?

1. A one-family house detached from any other house (including mobile homes)

2. A one-family house attached to one or more houses (e.g., townhome, duplex)

3. An apartment building, apartment complex, or condo

4. I did not have stable housing (staying in a hotel, in a shelter, living outside on the street or in a park, etc.).

5. Other (please specify): [OPEN FIELD]

{PAGE BREAK}

Think about your household, which includes everyone who lives with you.

A15. Please indicate whether the following statements are often true, sometimes true, or never true.

“Within the past 12 months, we worried whether our food would run out before we had money to buy more.”

1. Often true

2. Sometimes true

3. Never true

A16. “Within the past 12 months, the food we bought just didn’t last and we didn’t have money to get more.” 

1. Often true

2. Sometimes true

3. Never true

{PAGE BREAK}

MODULE B: BARRIERS

B1. What condition(s) had you been dealing with shortly before the care recipient’s [CANC_TYPE] cancer diagnosis? Select all that apply.

1. Arthritis, rheumatism, or gout

2. Benign tumors or cysts

3. Cancer

4. Chronic pain

5. Circulation problems (including blood clots)

6. Dementia or Alzheimer’s

7. Depression, anxiety, or emotional problems

8. Diabetes

9. Epilepsy or seizures

10. Fibromyalgia or lupus

11. Gastrointestinal conditions or disorders

12. Hearing problem

13. Heart problem

14. Hernia

15. Hypertension or high blood pressure

16. Kidney, bladder, or renal problems

17. Lung or breathing problem (for example, asthma or emphysema)

18. Migraine headaches (not just headaches)

19. Multiple Sclerosis (MS) or Muscular Dystrophy (MD)

20. Osteoporosis or tendinitis

21. Parkinson’s disease or other tremors

22. Stroke

23. Thyroid problems or Graves’ disease

24. Ulcer

25. Vision problem or problem seeing

26. Weight problem

27. Other impairment or problem - Please specify one: [SHOW IF SELECTED – OPEN]

28. None of the above [EXCLUSIVE SELECT]

{PAGE BREAK}

B2. The next questions are about your experiences during the care recipient’s cancer treatment.

Were you the primary caregiver for the care recipient, taking responsibility for most of the care recipient’s needs during their treatment?

1. Yes

2. No

{PAGE BREAK}

B3. During the care recipient’s cancer treatment, what type(s) of support did you provide? Select all that apply.

1. Provided emotional support

2. Provided financial support

3. Helped manage finances

4. Accompanied care recipient to medical appointments

5. Helped with medical decision-making

6. Coordinated medical care (e.g., finding health care providers, making appointments, helping with prescriptions/medications)

7. Provided transportation to and from doctor, for errands, etc.

8. Assisted with daily tasks (e.g., cooking, cleaning, childcare)

9. Other – Please specify [OPEN FIELD]

{PAGE BREAK}

B4. During the care recipient’s cancer treatment, were you paid for your role as a caregiver?

1. Yes

2. No

{PAGE BREAK}

B5_A. During the care recipient’s cancer treatment, what were your household’s source(s) of income? Select all that apply.

1. Income from employment

2. Pension or retirement

3. Government assistance (disability, social security)

4. Paid leave from work

5. Stipends or financial assistance from nonprofit organizations or charitable organizations

6. Other – Please specify [OPEN FIELD]

B5_B. Currently, what are your household’s sources of income? Select all that apply.

1. Income from employment

2. Pension or retirement

3. Government assistance (disability, social security)

4. Paid leave from work

5. Stipends or financial assistance from nonprofit organizations or charitable organizations

6. Other – Please specify [OPEN FIELD]

{PAGE BREAK}

B6. During the care recipient’s cancer treatment, how many hours per week on average did you spend caring for them (e.g., attending doctor’s appointments, helping them manage side effects, assisting with daily tasks like cooking or cleaning, spending time together, praying)?

1. Less than 5 hours

2. Between 5 to 10 hours

3. Between 11 to 15 hours

4. Between 16 to 20 hours

5. More than 20 hours

88. Don’t know

{PAGE BREAK}

B7. During the care recipient’s cancer treatment, was your employment impacted by your role as a caregiver?

1. Yes, my work schedule changed (e.g., went from full to part-time or my hours were reduced or increased)

2. Yes, my employment status changed (e.g., changed jobs, quit job, retired, or got an additional job).

3. No (e.g., job stayed the same, was already retired)

{PAGE BREAK}

B8. During the care recipient’s cancer treatment, did you use time off for caregiving?

1. Yes, I took paid time off.

2. Yes, I took unpaid time off.

3. Yes, I took both paid and unpaid time off.

4. No

{PAGE BREAK}

B9. During the care recipient’s cancer treatment, was your income impacted by your role as a caregiver?

1. Yes, I lost my source of income (e.g., stopped working or quit job).

2. Yes, my income decreased (e.g., reduced hours worked, switched to lower paying job).

3. Yes, my income increased.

4. No

{PAGE BREAK}

MODULE C: TREATMENT

C1. The next questions are about the care recipient’s cancer treatment.

Did the care recipient ever discuss the cost of treatment for their cancer with their doctors or other healthcare providers?

1. Yes

2. No

3. I don’t know whether they discussed it.

{PAGE BREAK}

C2. When the care recipient was choosing a treatment course for their cancer, did they consider the costs of specific treatments?

1. A great deal

2. Somewhat

3. Not at all

4. Not applicable; the care recipient did not receive information about treatment costs.

88. Don’t know

{PAGE BREAK}

C3. How much money would you estimate your care recipient/care recipient’s household has paid out-of-pocket in the past 12 months for medical expenses related to their [CANC_TYPE] cancer, including co-payments, hospital bills, deductibles, and medication costs – including hormonal therapy and other medications to help prevent cancer recurrence?

For this question, please think of out-of-pocket money that they spent and not money provided by the insurance company.

1. Less than $500

2. $500-$2,000

3. $2,001-$5,000

4. $5,001-$10,000

5. More than $10,000

88. Don’t know

C4. How much money would you estimate your care recipient has paid out-of-pocket in the past 12 months for other expenses related to their [CANC_TYPE] cancer, such as travel costs, parking, child/elderly care, special diet/food/drinks, etc.? For this question, please think of out-of-pocket money that they spent and not money provided by the insurance company.

1. Less than $500

2. $500-$2,000

3. $2,001-$5,000

4. $5,001-$10,000

5. More than $10,000

88. Don’t know

{PAGE BREAK}

C5. How would you describe the care recipient’s reaction to the money they spent for cancer treatment?

They spent…

1. …more money than they expected

2. …about as much money as they expected

3. …less money than they expected

88. Don’t know

{PAGE BREAK}

C6. What were the top non-medical issues the care recipient faced during their cancer treatment? You may select up to 5 issues.

[CHECK ALL THAT APPLY – UP TO 5]
C6_1. ___	Afraid the treatment will be too painful or unpleasant
C6_2. ___	Could not afford care (e.g., cost too much; other competing expenses)
C6_3. ___	Could not afford food
C6_4. ___	Lack of permanent, stable housing
C6_5. ___	No insurance coverage, or insurance company would not approve, cover or pay for care
C6_6. ___	Problems getting transportation to doctor's office for treatment or office was too far away
C6_7.	Could not get time off work for appointments and care (e.g., no paid sick leave, no flexible work schedule, no medical leave)
C6_8. ___	Didn’t know where to go to get care (e.g., no primary doctor or usual source of care to make referral; unfamiliar with local providers; local specialty practice closed)
C6_9. ___	Was refused services (e.g., out of network provider, not accepting new patients)
C6_10. ___	Took too long to get an appointment that worked for their schedule
C6_11. ___	Experienced discrimination (e.g., racial or ethnic discrimination, gender, weight, sexual orientation, disability status)
C6_12. ___	Unable to understand the doctor’s language (e.g., different language without access to interpretation)
C6_13. ___	Medical information was too hard to understand
C6_14. ___	Couldn’t get dependent care (e.g., for child, elderly relative, or relative with a disability)
C6_15. ___	Could not get a friend or family member to go with them to appointment
C7_16. ___	Other
C7_17. ___	Did not encounter any issues. [EXCLUSIVE SELECT]
C7_19	I was not aware of any issues. [EXCLUSIVE SELECT]

{PAGE BREAK}

C6_OTH. [SHOW IF C6_16 NE BLANK] Please describe other issue(s) that the care recipient faced during their cancer treatment. [OPEN FIELD]

{PAGE BREAK}

C6_RANK. Of the top issues you selected, please rank them, with “1” being the most important.

[NOTE: DISPLAY ONLY THE ISSUES ENDORSED IN QUESTION C6]

[NUMERIC RESPONSE – UP TO 5]	[NUMERIC RESPONSE – UP TO 5]
C6_ RANK_1. ___	Afraid the treatment will be too painful or unpleasant
C6_RANK_2. ___	Could not afford care (e.g., cost too much; other competing expenses)
C6_ RANK_3. ___	Could not afford food
C6_ RANK_4. ___	Lack of permanent, stable housing
C6_ RANK_5. ___	No insurance coverage, or insurance company would not approve, cover or pay for care
C6_ RANK_6. ___	Problems getting transportation to doctor's office for treatment or office was too far away
C6_ RANK_7. ___	Could not get time off work for appointments and care (e.g., no paid sick leave, no flexible work schedule, no medical leave)
C6_ RANK_8. ___	Didn’t know where to go to get care (e.g., no primary doctor or usual source of care to make referral; unfamiliar with local providers; local specialty practice closed)
C6_ RANK_9. ___	Was refused services (e.g., out of network provider, not accepting new patients)
C6_ RANK_10. ___	Took too long to get an appointment that worked for their schedule
C6_ RANK_11. ___	Experienced discrimination (e.g., racial or ethnic discrimination, gender, weight, sexual orientation, disability status)
C6_ RANK_12. ___	Unable to understand the doctor’s language (e.g., different language without access to interpretation)
C6_ RANK_13. ___	Medical information was too hard to understand
C6_ RANK_14. ___	Couldn’t get dependent care (e.g., for child, elderly relative, or relative with a disability)
C6_ RANK_15. ___	Could not get a friend or family member to go with them to appointment
C6_ RANK_16. ___	[C6_OTH]

{PAGE BREAK}

C6_FACILITATE. Please select the top 5 factors that made it easier for the care recipient to get medical care for their cancer treatment.

[NUMERIC RESPONSE – UP TO 5]	[NUMERIC RESPONSE – UP TO 5]
C6_FACILITATE_1	Worked with a nurse/patient navigator who provided additional support
C6_FACILITATE_2	Had support of a caregiver
C6_FACILITATE_3	Was able to manage side effects
C6_FACILITATE_4	Was able to afford care
C6_FACILITATE_5	Was able to cover all non-medical expenses like food
C6_FACILITATE_6	Had permanent, stable housing
C6_FACILITATE_7	Insurance covered most of their medical costs
C6_FACILITATE_8	Easy access to transportation
C6_FACILITATE_9	Convenient location of healthcare provider
C6_FACILITATE_10	Was able to take time off work for appointments and care (e.g., paid sick leave, flexible work schedule, medical leave available)
C6_FACILITATE_11	Connected to a provider by someone they knew (e.g., doctor, nurse, family member, friend, others on social media)
C6_FACILITATE_12	Was able to get an appointment with a doctor or specialist within a reasonable timeframe
C6_FACILITATE_13	Was able to make arrangements for dependent care (e.g., for child, elderly relative, or relative with a disability), if needed
C6_FACILITATE_14	Was treated with respect by their doctor
C6_FACILITATE_15	Was able to understand medical information that was shared with them
C6_FACILITATE_16	Other [please specify]: ___OPEN TEXT FIELD

{PAGE BREAK}

C7. During the care recipient’s cancer treatment, was your health impacted by your role as caregiver?

1. Yes, it was negatively impacted.

2. Yes, it was positively impacted.

3. No, my health was not impacted.

C8. [SHOW IF C7=1] Please indicate which ailments you experienced as a result of your role as caregiver. Select all that apply.

1. Stress

2. Anxiety

3. Depression

4. Fatigue

5. Poor diet

6. Physical strain

7. Isolation

8. Poor sleep

9. Other – Please specify: [OPEN FIELD]

99. Prefer not to answer [EXCLUSIVE SELECT]

{PAGE BREAK}

C9. During the care recipient’s cancer treatment, how much support did you get from your family?

1. All of the support I needed

2. Some of the support I needed

3. No support

99. Prefer not to answer

C10. During the care recipient’s cancer treatment, how much support did you get from your friends?

1. All of the support I needed

2. Some of the support I needed

3. No support

99. Prefer not to answer

{PAGE BREAK}

MODULE D: MORBIDITY

D1_INTRO. The next three questions will ask about how you have felt more recently, in the past week.

D2. Below is a list of statements that other people facing an illness have said are important. For each of the following statements, please select your response as it applies to the past 7 days.	1 – Not at all	2 – A little bit	3 – Some-what	4 – Quite a bit	5 – Very much
D2_1. I have a lack of energy.
D2_2. I have nausea.
D2_3. Because of my physical condition, I have trouble meeting the needs of my family.
D2_4. I have pain.
D2_5. I feel ill.
D2_6. I am able to enjoy life.
D2_7. I am forced to spend time in bed.

{PAGE BREAK}

D2a. Are you currently taking any medication or receiving other medical treatments?

1. No

2. Yes

{PAGE BREAK}

D2b. [SHOW IF D2a=2] Please select your response to the following statement as it applies to the past 7 days.	1 – Not at all	2 – A little bit	3 – Some-what	4 – Quite a bit	5 – Very much
D2b_1. I am bothered by the side effects of treatment.

{PAGE BREAK}

D3. Below is a list of statements that other people facing an illness have said are important. For each of the following statements, please select your response as it applies to the past 7 days.	1 – Not at all	2 – A little bit	3 – Some-what	4 – Quite a bit	5 – Very much
D3_1. I am satisfied with how I am coping with my loved one’s illness.
D3_2. I am losing hope in the fight against my loved one’s illness.
D3_3. I feel nervous.
D3_4. I worry about my loved one dying.
D3_5. I worry that my loved one’s condition will get worse.

{PAGE BREAK}

D4. Below is a list of statements that other people facing an illness have said are important. For each of the following statements, please select your response as it applies to the past 7 days.	1 – Not at all	2 – A little bit	3 – Some-what	4 – Quite a bit	5 – Very much
D4_1. I am able to work (include work at home).
D4_2. My work (include work at home) is fulfilling.
D4_3. I am able to enjoy life.
D4_4. I have accepted my loved one’s illness.
D4_5. I am sleeping well.
D4_6. I am enjoying the things I usually do for fun.
D4_7. I am content with the quality of my life right now.

{PAGE BREAK}

MODULE E: HEALTH CARE FAILURES

E1. During the care recipient’s cancer treatment, were you provided with information or resources specifically for caregivers? Select all that apply.

1. Yes, from my care recipient’s doctor or health care team

2. Yes, from a nonprofit organization (e.g., American Cancer Society)

3. Yes, from another source – Please specify: [OPEN FIELD]

4. No [EXCLUSIVE SELECT]

88. Don’t know [EXCLUSIVE SELECT]

{PAGE BREAK}

E2. How informed did you feel about the potential side effects from the care recipient’s treatment?

1. Very

2. Somewhat

3. Not at all

E3. How informed did you feel about the potential complications (e.g., drains blocking, wounds not healing) from the care recipient’s treatment?

1. Very

2. Somewhat

3. Not at all

{PAGE BREAK}

E4. How often did the care recipient’s doctors and other healthcare providers give you as much cancer-related information as you wanted?

1. Never

2. Sometimes

3. Usually

4. Always

5. Not applicable (I did not ask for cancer-related information.)

E4_SPEC. [SHOW IF E4= 1 OR 2] Please describe your experience (optional): [OPEN FIELD]

{PAGE BREAK}

E5. How often did the care recipient’s doctors and other healthcare providers show respect for what you had to say?

1. Never

2. Sometimes

3. Usually

4. Always

5. Not applicable (I did not speak with my care recipient’s doctor.)

E5_SPEC. [SHOW IF E5= 1 OR 2] Please describe your experience (optional): [OPEN FIELD]

{PAGE BREAK}

E6. How often did the care recipient’s other family members and/or friends show respect or appreciate your efforts (e.g., help with decision-making, house chores, emotional support, transportation, etc.)?

1. Never

2. Sometimes

3. Usually

4. Always

5. Not applicable (I did not speak with other family members and/or friends.)

E6_SPEC. [SHOW IF E6= 1 OR 2] Please describe your experience (optional): [OPEN FIELD]

{PAGE BREAK}

MODULE F: CONTACT

F1_INCENT. As a thank you for completing this survey, we will provide you with $40. Do you prefer to receive an electronic VISA gift card emailed to you or a check mailed to your home?

1. Electronic gift card emailed to me

2. Check mailed to my home

{PAGE BREAK}

F1. [IF F1_INCENT=2] Please enter your contact information so that we may send you a $40 check.

F1_1. Full name: [OPEN]

F1_2. Street address line 1: [OPEN]

F1_3. Street address line 2: [OPEN]

F1_4. City [OPEN]

F1_5: State: [OPEN]

F1_6: Zip code: [OPEN]

[POST LOGIC: GO TO F3]

{PAGE BREAK}

F2: Please enter your e-mail address for the electronic gift card: [OPEN]

F2a: Please retype the email address for confirmation: [OPEN]

EMAIL_CHK. [IF F2 != F2a: The email address that you provided does not match. Please re-enter the email address.]

{PAGE BREAK}

F3. We will be conducting 1-hour phone /online interviews with a subset of caregivers who complete this survey and are willing to volunteer their time.

Would you like to be considered to participate in a 1-hour phone/online interview?

1. Yes

2. No

{PAGE BREAK}

F4. [SHOW IF F3=1] Please provide your phone number: [OPEN]

F5. [SHOW IF F3=1] Please provide your e-mail address: [OPEN]

F6. Please retype the email address for confirmation: [OPEN]

EMAIL_CHK2. [IF F5 != F6: The email address that you provided does not match. Please re-enter the email address.]

{PAGE BREAK}

END. Thank you!

If you have any questions about the survey, please do not hesitate to call us toll free at (833) 997-2714 or email us at [email protected].

Please click [SUBMIT] to submit your responses.

Public reporting burden of this collection of information is estimated to average of 20 minutes per response, including the time for reviewing instructions, searching existing data sources, gathering and maintaining the data needed, and completing and reviewing the collection of information. 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 CDC/ATSDR Reports Clearance Officer; 1600 Clifton Road NE, MS D-74, Atlanta, Georgia 30333; ATTN: PRA (0920-####).