Attach A-1_Questionnaire to Test_English

ATTACHMENT A-1: HINTS 4 QUESTIONNAIRE CONTENT (CYCLE 3) – ENGLISH

OMB No. 0952-0589

Exp. 04/30/2014

HINTS 4, CYCLE 3 DRAFT INSTRUMENT FOR TESTING

STATEMENT OF PRIVACY: Collection of this information is authorized by The Public Health Service Act, Sections 411 (42 USC 285 a) and 412 (42 USC 285a-1.a and 285a1.3). The purpose of this data collection is to evaluate whether the survey questions are easy to understand. The results of the data collection will be used to improve the survey instrument. Rights of study participants are protected by The Privacy Act of 1974. Participation is voluntary, and there are no penalties for not participating or withdrawing from the study at any time. Refusal to participate will not affect your benefits in any way. The information collected in this study will be kept private under the Privacy Act and will only be seen by people authorized to work on this project. The report summarizing the findings will not contain any names or identifying information. Identifying information will be destroyed when the project ends.

NOTIFICATION TO RESPONDENT OF ESTIMATED BURDEN: Public reporting burden for this collection of information is estimated to average 90 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: NIH, Project Clearance Branch, 6705 Rockledge Drive, MSC 7974, Bethesda, MD 20892-7974, ATTN: PRA (0925-0589). Do not return the completed form to this address.

A: Looking For Health Information

A1. Have you ever looked for information about health or medical topics from any source?

Yes

No   GO TO A7 in the next column

X

A2. The most recent time you looked for information about health or medical topics, where did you go first?

Mark only one.

Books

Brochures, pamphlets, etc.

Cancer organization

Family

Friend/Co-worker

Doctor or health care provider

Internet

Library

Magazines

Newspapers

Telephone information number

Complementary, alternative, or unconventional practitioner

Other-Specify

A3. Did you look or go anywhere else that time?

Yes

No

A4. The most recent time you looked for information about health or medical topics, who was it for?

Myself

Someone else

Both myself and someone else

A5. Do family members and friends ask you for information or advice on health topics?

Yes

No

A6. Based on the results of your most recent search for information about health or medical topics, how much do you agree or disagree with each of the following statements?

a. It took a lot of effort to get the information you needed
b. You felt frustrated during your search for the information
c. You were concerned about the quality of the information
d. The information you found was hard to understand

A7. Overall, how confident are you that you could get advice or information about health or medical topics if you needed it?

Completely confident

Very confident

Somewhat confident

A little confident

Not confident at all

A8. In general, how much would you trust information about health or medical topics from each of the following?

a. A doctor
b. Family or friends
c. Newspapers or magazines
d. Radio
e. Internet
f. Television
g. Government health agencies
h. Charitable organizations
i. Religious organizations and leaders

A9. Imagine that you had a strong need to get information about health or medical topics. Where would you go first?

X

Mark only one.

Books

Brochures, pamphlets, etc.

Cancer organization

Family

Friend/Co-worker

Doctor or health care provider

Internet

Library

Magazines

Newspapers

Telephone information number

Complementary, alternative, or unconventional
practitioner

Other-Specify

A10. Have you ever looked for information about cancer from any source?

Yes

No

A11. How much attention do you pay to information about health or medical topics from each of the following sources?

a. In online newspapers
b. In print newspapers
c. In special health or medical magazines or newsletters
d. On the Internet
e. On the radio
f. On local television news programs
g. On national or cable television news programs
h. On social networking sites such as Facebook or Twitter

B: Using the Internet to Find Information

B1. Do you ever go on-line to access the Internet or World Wide Web, or to send and receive e-mail?

Yes

No   GO TO C1 on the next page

B2. When you use the Internet, do you access it through...

	Yes	No
a. A regular dial-up telephone line
b. Broadband such as DSL, cable or FiOS
c. A cellular network (i.e., phone, 3G/4G)
d. A wireless network (Wi-Fi)

B3. Do you access the Internet any other way?

Yes – Specify

No

B5. Is there a specific Internet site you like to go to for health or medical information?

Yes

No   GO TO B7 on the next page

B6. Specify which Internet site you especially like as a source of health or medical information:

B7. In the last 12 months, have you used the Internet for any of the following reasons?

	Yes	No
a. Visited a social networking site, such as Facebook or LinkedIn
b. Wrote in an online diary or blog (i.e., Web log)
c. Shared photos, videos, or other multimedia content on sites such as YouTube or Instagram
d. Downloaded to a mobile device, such as an MP3 player, cell phone, tablet computer or electronic book device

B8. In the last 12 months, have you used the Internet for any of the following reasons?

	Yes	No
a. Looked for health or medical information for yourself?
b. Looked for health or medical information for someone else
c. Looked for information about quitting smoking
d. Bought medicine or vitamins online
e. Participated in an online forum or support group for people with a similar health or medical issue
f. Used a website to help you with your diet, weight, or physical activity
g. Looked for a health care provider
h. Downloaded health information to a mobile device, such as an MP3 player, cell phone, tablet computer or electronic book device
i. Shared health information on social media sites, such as Facebook or Twitter
j. Exchanged social support about health concerns with family or friends
k. Kept track of personal health information such as care received, test results, or upcoming medical appointments
l. Watched a health-related video on YouTube

B9. Have you done anything else health-related on the Internet?

Yes-Specify

No

B10. Scientists doing research should be able to review my medical information if the information cannot be linked to me personally.

Strongly agree

Agree

Disagree

Strongly disagree

B11. Which of the following methods have you used to electronically communicate (send or receive) health or medical information with your doctor or health care provider? Check all that apply.

E-mail

Text message

Secure message

Smart phone application

Video conference on your mobile phone (e.g., Skype, Facetime, etc.)

Social media (e.g., Facebook, Google+, CaringBridge, etc.)

Other (please specify):_______________________

B12.What types of medical or health information would you feel uncomfortable receiving electronically from your doctor or health care provider through your mobile phone due to privacy or security concerns? Check all that apply:

Appointment Reminders

General Health Tips

Medication Reminders

Lab/Test Results

Diagnostic Information (i.e., Medical Illnesses or Diseases)

None of the above

B13. What types of medical or health information would you feel uncomfortable sending electronically to your doctor or health care provider through your mobile phone due to privacy and security concerns? Check all that apply:

Vital signs (e.g., heart rate, blood pressure, glucose levels, etc.)

Lifestyle behaviors (e.g., physical activity, food intake, sleep patterns, etc.)

Symptoms (e.g., nausea, pain, dizziness, etc.)

Digital images/video (e.g., photos of skin lesions)

None of the above

B14. How much do you agree with the following statement: “I would be interested in electronically communicating (send or receive) medical or health information with my health care providers and doctors using my mobile phone despite any concerns I might have about privacy and security”.

Strongly agree

Agree

Disagree

Strongly disagree

C: Your Health Care

C1. Not including psychiatrists and other mental health professionals, is there a particular doctor, nurse, or other health professional that you see most often?

Yes

No

C2. Do you have any of the following health insurance or health coverage plans:

	Yes	No
a. Insurance through a current or former employer or union (of you or another family member)
b. Insurance purchased directly from an insurance company (by you or another family member)
c. Medicare
d. Medicaid, Medical Assistance, or any kind of government-assistance plan for those with low incomes or a disability
e. TRICARE or other military health care
f. VA (including those who have ever used or enrolled for VA health care)
g. Indian Health Service

C3. Do you have any other health care coverage plan for yourself (please do not include dental or vision plans)?

Yes-Specify

No

C4. About how long has it been since you last visited a doctor for a routine checkup? A routine checkup is a general physical exam, not an exam for a specific injury, illness, or condition.

Within past year
(anytime less than 12 months ago)

Within past 2 years
(1 year but less than 2 years ago)

Within past 5 years
(2 years but less than 5 years ago)

5 or more years ago

Don't know

Never

C5. In the past 12 months, not counting times you went to an emergency room, how many times did you go to a doctor, nurse, or other health professional to get care for yourself?

None   GO TO D1 on the next page

1 time

2 times

3 times

4 times

5-9 times

10 or more times

C6. The following questions are about your communication with all doctors, nurses, or other health professionals you saw during the past 12 months…

How often did they do each of the following:
	a. Give you the chance to ask all the health-related questions you had?
	b. Give the attention you needed to your feelings and emotions?
	c. Involve you in decisions about your health care as much as you wanted?
	d. Make sure you understood the things you needed to do to take care of your health?
	e. Explain things in a way you could understand?
	f. Spend enough time with you?
	g. Help you deal with feelings of uncertainty about your health or health care?

C7. In the past 12 months, how often did you feel you could rely on your doctors, nurses, or other health care professionals to take care of your health care needs?

Always

Usually

Sometimes

Never

C8. Overall, how would you rate the quality of health care you received in the past 12 months?

Excellent

Very good

Good

Fair

Poor

C9. In the past 12 months, have you talked to a doctor, nurse, or other health professional about any kind of health information you have gotten from the Internet?

Yes

No GO TO D1 in the next column

C10. In the past 12 months when you talked with a health care professional, how interested were they in hearing about the information you found on-line?

Very interested

Somewhat interested

A little interested

Not at all interested

C11. Have you ever been in a medical research study where you got one of two treatments, such as medicines or surgery procedures?

Yes

No

D: Your Health, Nutrition

and Physical Activity

D1. In general, would you say your health is...

Excellent,

Very good,

Good,

Fair, or

Poor?

D2. Over the past 2 weeks, how often have you been bothered by any of the following problems?

a. Little interest or pleasure in doing things
b. Feeling down, depressed, or hopeless
c. Feeling nervous, anxious, or on edge
d. Not being able to stop or control worrying

D3. Overall, how confident are you about your ability to take good care of your health?

Completely confident

Very confident

Somewhat confident

A little confident

Not confident at all

D4. How often in the past 12 months would you say you were worried or stressed about having enough money to buy nutritious meals?.

Always

Usually

Sometimes

Rarely

Never

D5. When available, how often do you use menu information on calories in deciding what to order?

Always

Often

Sometimes

Rarely

Never

1 cup of fruit could be:

• 1 small apple

• 1 large banana

• 1 large orange

• 8 large strawberries

• 1 medium pear

• 2 large plums

• 32 seedless grapes

• 1 cup (8 oz.) fruit juice

• ½ cup dried fruit

• 1 inch-thick wedge of watermelon

D6. About how many cups of fruit (including 100% pure fruit juice) do you eat or drink each day?

None

½ cup or less

½ cup to 1 cup

1 to 2 cups

2 to 3 cups

3 to 4 cups

4 or more cups

D7. About how many cups of vegetables (including 100% pure vegetable juice) do you eat or drink each day?

None

½ cup or less

½ cup to 1 cup

1 to 2 cups

2 to 3 cups

3 to 4 cups

1 cup of vegetables could be:

• 3 broccoli spears

• 1 cup cooked leafy greens

• 2 cups lettuce or raw greens

• 12 baby carrots

• 1 medium potato

• 1 large sweet potato

• 1 large ear of corn

• 1 large raw tomato

• 2 large celery sticks

• 1 cup of cooked beans

4 or more cups

D8. Not counting any diet soda or pop, about how often do you drink regular soda or pop in a typical week?

Every day

5-6 days a week

3-4 days a week

1-2 days a week

Less often than 1 day a week

I don’t drink any regular soda or pop

D9. In a typical week, how many days do you do any physical activity or exercise of at least moderate intensity, such as brisk walking, bicycling at a regular pace, and swimming at a regular pace?

None   GO TO H3 in the next column

1 day per week

2 days per week

3 days per week

4 days per week

5 days per week

6 days per week

7 days per week

D10. On the days that you do any physical activity or exercise of at least moderate intensity, how long do you typically do these activities?

Write a number in one box below.

Minutes

Hours

D11. In a typical week, outside of your job or work around the house, how many days do you do leisure-time physical activities specifically designed to strengthen your muscles such as lifting weights or circuit training (do not include cardio exercise such as walking, biking, or swimming)?

None

1 day per week

2 days per week

3 days per week

4 days per week

5 days per week

6 days per week

7 days per week

D12. Over the past 30 days, in your leisure time, how many hours per day, on average, did you sit and watch TV or movies, surf the web, or play computer games? Do not include “active gaming” such as Wii.

Hours per day

D13. About how tall are you without shoes?

Feet  and

Inches

D14. About how much do you weigh, in pounds, without shoes?

Pounds

This information is on the back of a container of a pint of ice cream

D15. If you eat the entire container, how many calories will you eat?

_____

D16. If you are allowed to eat 60 g of carbohydrates as a snack, how much ice cream could you have?

_____

D17. Your doctor advises you to reduce the amount of saturated fat in your diet. You usually have 42 g of saturated fat each day, which includes 1 serving of ice cream. If you stop eating ice cream, how many grams of saturated fat would you be consuming each day?

_____ grams

D18. If you usually eat 2500 calories in a day, what percentage of your daily value of calories will you be eating if you eat one serving?

_____ percent

D19. Pretend that you are allergic to the following substances: Penicillin, peanuts, latex gloves and bee stings.

Is it safe for you to eat this ice cream?

Yes

No

Not sure

D20. How many times in the past 12 months have you used a tanning bed or booth?

0 times

1 to 2 times

3 to 10 times

11 to 24 times

25 or more times

D21. When you are outside for more than one hour on a warm, sunny day, how often do you wear sunscreen?

Never

Rarely

Sometimes

Often

Always

Don’t go out on sunny days

D22. When you are outside for more than one hour on a warm, sunny day, how often do you ...

a. wear long pants?
b. wear a hat that shades your face, ears and neck?
c. wear a shirt with sleeves that cover your shoulders?
d. stay in the shade or under an umbrella?

D23. How much sleep do you usually get…

Hours

Minutes

a. On a weekday (e.g., workday or school day)?

b. On a weekend (e.g., non-work or non-school day)?

The following questions are about control over different parts of your life that may be affected by the experience of breast cancer. The questions ask about how much control you personally have over certain aspects of your life. Please read each question carefully and use the following rating scale to select the response that best reflects your current control beliefs. Space is provided to fill in a response to each item.

No control

A little bit of control

A moderate amount of control

A great deal of control

This item does not apply to you

D24. How much personal control do you think you have over your physical symptoms, including…

No control

A little bit of control

A moderate amount of control

A great deal of control

This item does not apply to you

a. fatigue or weakness?
b. nausea or vomiting?
c. trouble sleeping?
d. mobility/flexibility?
e. pain or discomfort?
f. arm swelling?

D25. How much personal control do you think you have over your medical decisions and care, including…

No control

A little bit of control

A moderate amount of control

A great deal of control

This item does not apply to you

a. gathering important information and getting your questions answered?
b. receiving the treatments you want?
c. choosing a doctor you are comfortable with?
d. scheduling your treatments at convenient times?

D26. How much personal control do you think you have over the outcomes of your breast cancer, including…

No control

A little bit of control

A moderate amount of control

A great deal of control

This item does not apply to you

a. recovering from your breast cancer?
b. preventing breast cancer from coming back?

D27. How much personal control do you think you have over your emotions, including…

No control

A little bit of control

A moderate amount of control

A great deal of control

This item does not apply to you

a. feeling sad?
b. feeling out of control?
c. feeling guilty?
d. outbursts of crying?
e. feeling angry?
f. worrying about the future?

D28. How much personal control do you think you have over your relationships with other people in your life, including your…

No control

A little bit of control

A moderate amount of control

A great deal of control

This item does not apply to you

a. partner/spouse?
b. other family members?
c. friends?
d. co-workers?
e. medical care providers (doctors and nurses)

D29. In general, how much personal control do you think you have over your life, including…

No control

A little bit of control

A moderate amount of control

A great deal of control

This item does not apply to you

a. the events/things that are most important to you?
b. your personal problems?
c. overcoming challenges that come your way?

E: Patient Activation

E1. Do you always, usually, sometimes or never bring with you to your doctor visits a list of questions or concerns you want to cover?

Always

Usually

Sometimes

Never

Don’t know

E2. Do you always, usually, sometimes or never take a list of all your prescribed medicines to your doctor visits?

Always

Usually

Sometimes

Never

Not applicable

Don’t know

E3. The following always, usually, sometimes or never happens: I ask my doctor to explain a test, treatment, or procedure to me in detail.

Always

Usually

Sometimes

Never

Not applicable

E4. Have you ever asked your doctor questions about any treatment, test or prescription that he or she has recommended?

Yes

No

Does not apply

E5. In the past 12 months, have you talked to a doctor, nurse, or other health professional about any kind of health information you have gotten from . .

		Yes		No
a. The internet?
b. Magazines?
c. Newspapers?
d. Advertising?
	b. Family or friends
	c. Newspapers or magazines
	d. Radio
	e. Internet
	f. Television
	g. Government health agencies
	h. Charitable organizations
	i. Religious organizations and leaders

E6. Have you ever checked the medication that a pharmacist gave you with the prescription your doctor wrote?

Yes

No

Does not apply

E7. How often do you do your own research on a health or medical topic after seeing your doctor?

Very often

Often

Sometimes

Rarely

Never

E8. Taking an active role in my own health care is the most important factor in determining my health and ability to function.

Strongly agree

Agree

Disagree

Strongly Disagree

Not applicable

E9. When all is said and done, I am the person who is responsible for managing my health condition

Strongly agree

Agree

Disagree

Strongly Disagree

Not applicable

E10. Do you always, usually, sometimes or never make sure you understand the results of any medical test or procedure? (An example would be an x-ray, blood tests, or EKG for heart conditions)

Always

Usually

Sometimes

Never

Don’t know

E11. Do you always, usually, sometimes or never read information about a new prescription, such as side effects and precautions?

Always

Usually

Sometimes

Never

Don’t know

E12. Have you ever brought a friend or a relative to a doctor’s appointment so that they could help ask questions, understand, or remember what the doctor was telling you?

Yes

No

Does not apply

E13. Have you ever called to check on the results of a medical test you had done?

Yes

No

Does not apply

E14. Have you ever consulted with your doctor about the hospital you go to?

Yes

No

Does not apply

E15. Have you ever talked to a surgeon about the details of surgery, such as exactly what they will be doing, how long it will take and the recovery process?

Yes

No

Does not apply

E16. Please tell me how confident you are that you can identify when it is necessary for you to get medical care.

Very confident

Confident

Somewhat confident

Not at all confident

Don’t know

E17. The following always, usually, sometimes or never happens: I ask my doctor to explain a test, treatment, or procedure to me in detail.

Always

Usually

Sometimes

Never

Not applicable

Don’t know

E18. The following always, usually, sometimes or never happens: Before I go to a new doctor, I find out as much as I can about his or her qualifications

Always

Usually

Sometimes

Never

Not applicable

Don’t know

E19. Instead of waiting for them to tell me, I usually ask the doctor or nurse immediately after an exam about my health

Strongly agree

Somewhat agree

Somewhat disagree

Strongly disagree

E20. I usually don’t ask the doctor or nurse many questions about what they’re doing during a medical exam

Strongly agree

Somewhat agree

Somewhat disagree

Strongly disagree

E21. I do what I can to get checked for cancer.

Strongly agree

Somewhat agree

Somewhat disagree

Strongly disagree

E23. In your opinion, how good is cancer screening at separating people who have cancer from people who don’t have cancer?

Not good at all

Slightly good

Pretty good

Very good

E24. As far as you know, can most cancer screening tests show...

	Yes	No	DK
a. Whether a person actually has cancer?
b. What stage of cancer a person has?
c. Whether a person has pre-cancer?
d. What the chances are that a person might have cancer?

F: Women and Cancer

F1. Are you male or female?

Male   GO TO G8

Female

F2. Has a doctor ever told you that you could choose whether or not to have the Pap test?

Yes

No

F3. How long ago did you have your most recent Pap test to check for cervical cancer?

A year ago or less

More than 1, up to 2 years ago

More than 2, up to 3 years ago

More than 3, up to 5 years ago

More than 5 years ago

I have never had a Pap test

F4. A mammogram is an x-ray of each breast to look for breast cancer. During the past 12 months, did a doctor, nurse, or other health professional advise you to get a mammogram?

Yes

No

Not sure

F5. A mammogram is an x-ray of each breast to look for cancer.

Has a doctor ever told you that you could choose whether or not to have a mammogram?

Yes

No

F6. When did you have your most recent mammogram to check for breast cancer, if ever?

A year ago or less

More than 1, up to 2 years ago

More than 2, up to 3 years ago

More than 3, up to 5 years ago

More than 5 years ago

I have never had a mammogram

F7. Is there any particular reason why you haven’t had a mammogram {yet}?

______________________________________________________________________

F8. Is there any particular reason why you haven’t had a mammogram {in the past 2 years}?

______________________________________________________________________

G: Screening for Cancer

G1. A vaccine to prevent HPV infection is available and is called the HPV shot, cervical cancer vaccine, GARDASIL®, or Cervarix®.

Has a doctor or other health care professional ever talked with you about the HPV shot or vaccine?

Yes

No

G2. Have you ever heard of HPV? HPV stands for Human Papillomavirus

Yes

No

Not sure

G3. Have you ever heard of HPV? HPV stands for Human Papillomavirus. It is not HIV, HSV, or herpes.

Yes

No

Not sure

G4. Do you think that HPV causes cervical cancer?

Yes

No

Not sure

G5. Do you think HPV can cause cervical cancer?

Yes

No

Not sure

G6. Do you think that HPV is a sexually transmitted disease?

Yes

No

Not sure

G7. Do you think that HPV will often go away on its own without treatment?

Yes

No

Not sure

G8. There are a few different tests to check for colon cancer. These tests include:

A colonoscopy – For this test, a tube is inserted into your rectum and you are given medication that may make you feel sleepy. After the procedure, you need someone to drive you home.

A sigmoidoscopy – For this test, you are awake when the tube is inserted into your rectum. After the test you can drive yourself home.

A stool blood test – For this test, you collect a stool sample at home, and then provide it to a doctor or lab for testing.

Has a doctor ever told you that you could choose whether or not to have a test for colon cancer?

Yes

No

G9. Have you ever had one of these tests to check for colon cancer?

Yes

No

G10. The following questions are about discussions doctors or other health care professionals may have with their patients about the PSA test that is used to look for prostate cancer.

Have you ever had a PSA test?

Yes

No

G11. Has a doctor ever discussed with you whether or not you should have the PSA test?

Yes

No   GO TO H1 below

G12. In that discussion, did the doctor ask you whether or not you wanted to have the PSA test?

Yes

No

G13. Did a doctor ever tell you that some experts disagree about whether men should have PSA tests?

Yes

No

G14. Has a doctor or other health care professional ever told you that...

	Yes	No
a. The PSA test is not always accurate?
b. Some types of prostate cancer are slow-growing and need no treatment?
c. Treating any type of prostate cancer can lead to serious side-effects, such as problems with urination or having sex?

H: Your Cancer History

H1. Have you ever been diagnosed as having cancer?

Yes

No   GO TO H4 on the next page

X

H2. What type of cancer did you have?

Mark all that apply.

Bladder cancer

Bone cancer

Breast cancer

Cervical cancer (cancer of the cervix)

Colon cancer

Endometrial cancer (cancer of the uterus)

Head and neck cancer

Hodgkin's lymphoma

Leukemia/Blood cancer

Liver cancer

Lung cancer

Melanoma

Non-Hodgkin lymphoma

Oral cancer

Ovarian cancer

Pancreatic cancer

Pharyngeal (throat) cancer

Prostate cancer

Rectal cancer

Renal (kidney) cancer

Skin cancer, non-melanoma

Stomach cancer

Other-Specify

H3. At what age were you first told that you had cancer?

Age

H4. Has a doctor or other member of your medical team discussed clinical trials as a treatment option for your cancer?

Yes

No

H5. Clinical trials are research studies that involve people. They are designed to test the safety and effectiveness of new treatments and to compare new treatments with the standard care that people currently get. Have you ever heard of a clinical trial?

Yes

No

Don’t know

H6. Did you hear about clinical trials from...

	Yes	No
a. Doctor, nurse, or other medical professional?
b. Family member or friend
c. Internet
d. A specific organization
e. Newspaper, television, or radio
f. A fictional t.v show, movie or book
g. An advertisement
h. A health fair
i. Some other source
j. I don’t know the source

H7. Have you ever participated in a clinical trial for treatment of your cancer?

Yes

No

Don’t know

H8. Have you ever participated in a clinical trial?

Yes

No

Don’t know

H9. If you were diagnosed with cancer, how likely is it that you would participate in a research study of a new treatment?

Very likely

Somewhat likely

Equally likely as unlikely

Somewhat unlikely

Very unlikely

I: Beliefs About Cancer

Think about cancer in general when answering the questions in this section.

I1. How likely are you to get cancer in your lifetime?

Very unlikely

Unlikely

Neither unlikely nor likely

Likely

Very likely

I2. Compared to other people your age, how likely are you to get cancer in your lifetime?

Much less likely

Less likely

About the same

More likely

Much more likely

I3. Select one answer that best represents your opinion about the statement: “I feel like I could easily get cancer in my lifetime.”

I feel very strongly that this will NOT happen

I feel somewhat strongly that this will NOT happen

I feel I am just as likely to get cancer as I am to not get cancer

I feel somewhat strongly that this WILL happen

I feel very strongly that this WILL happen

I4. How much do you agree or disagree with each of the following statements?

a. It seems like everything causes cancer
b. There’s not much you can do to lower your chances of getting cancer
c. There are so many different recommendations about preventing cancer, it's hard to know which ones to follow
d. In adults, cancer is more common than heart disease

I5. As far as you know, who has a greater chance of getting cancer – a person with a 1 in 1,000 chance of getting cancer, or a person with a 1 in 100 chance?

1 in 1,000 is a greater chance of getting cancer

1 in 100 is a greater chance of getting cancer

I6. Have any of your family members ever had cancer?

Yes

No

Not sure

I7. Which of the following numbers represents the biggest risk of getting a disease?

1 in 100

1 in 1000

1 in 10

I

I8. When people tell you the chance of something happening, do you prefer that they use words (“it rarely happens”) or numbers (“there’s a 1% chance”)?

1 - Always Prefer Words

2

3

4

5

6 - Always Prefer Numbers

I9. People can talk about the chance of something happening using either words like “it rarely happens” or numbers, like “there’s a 5% chance. When people tell you the chance of something happening do you prefer that they use words or numbers?

Prefer Words

Prefer Numbers

No preference

I10. In the past 30 days, how often have you felt…

(5 point scale: very slightly or not at all through extremely)

All of the time

Most of the time

Some of the time

A little of the time

None of the time

a. Happy?
b. Angry?
c. Anxious?
d. Hopeful?

I11. How likely is it that the average {man/woman} your age will develop cancer in {his/her} lifetime?

Very likely

Somewhat likely

Neither likely or unlikely

Somewhat unlikely

Very unlikely

I12. How likely are you to get diabetes in your lifetime?

I have diabetes

Very likely

Somewhat likely

Neither likely or unlikely

Somewhat unlikely

Very unlikely

I13. How likely are you to get heart disease in your lifetime?

I have heart disease

Very likely

Somewhat likely

Neither likely or unlikely

Somewhat unlikely

Very unlikely

I14. How much do you agree or disagree with each of the following statements?

a. When I feel threatened or anxious I find myself thinking about my strengths
b. When I feel threatened or anxious I find myself thinking about my values
c. When I feel threatened or anxious I find myself thinking about my strengths and values
d. I hardly ever expect things to go my way
e. I’m always optimistic about my future
f. When I think about cancer, I think about death

I15. How objective would the following sources be in evaluating new guidelines for how often women should get pap tests (cervical cancer screening)?

Not at all

A little

Some

A lot

a. A professional organization of OB/GYNs?
b. A government-appointed panel of experts
c. A family member
d. The media
e. Your primary care doctor
f. Your OB/GYN (for women)
g. A family member
h. The media

I16. How much would you trust these individuals in evaluating new guidelines for how often women should get pap tests (cervical cancer screening)?

Not at all

A little

Some

A lot

a. A professional organization of OB/GYNs?
b. A government-appointed panel of experts
c. A family member
d. The media
e. Your primary care doctor
f. Your OB/GYN (for women)
g. A family member
h. The media

I17. How high quality would recommendations be from the following individuals in evaluating new guidelines for how often women should get pap tests (cervical cancer screening)?

Not at all

A little

Some

A lot

a. A professional organization of OB/GYNs?
b. A government-appointed panel of experts
c. A family member
d. The media
e. Your primary care doctor
f. Your OB/GYN (for women)
g. A family member
h. The media

K: Medical Research & Medical Records

K1. As far as you know, do any of your doctors or other health care providers maintain your medical information in a computerized system?

Yes

No

K2. Please indicate how important each of the following statements is to you.

a. Doctors and other health care providers should be able to share your medical information with each other electronically
b. You should be able to get to your own medical information electronically

K3. How confident are you that safeguards (including the use of technology) are in place to protect your medical records from being seen by people who aren’t permitted to see them?

Having safeguards (including the use of technology) in place has to do with the security of your medical records.

Very confident

Somewhat confident

Not confident

K4. How confident are you that you have some say in who is allowed to collect, use and share your medical information?

Having a say in who can collect, use and share your medical information has to do with the privacy of your records

Very confident

Somewhat confident

Not confident

K5. Have you ever kept information from your health care provider because you were concerned about the privacy or security of your medical record?

Yes

No

K6. If your medical information is sent by fax from one health care provider to another, how concerned are you that an unauthorized person would see it?

Very concerned

Somewhat concerned

Not concerned

K7. If your medical information is sent electronically from one health care provider to another, how concerned are you that an unauthorized person would see it? (Electronically means from computer to computer, instead of by telephone, mail, or fax machine).

Very concerned

Somewhat concerned

Not concerned

L: Tobacco Products

L1. Have you smoked at least 100 cigarettes in your entire life?

Yes

No   GO TO L5

L2. How often do you now smoke cigarettes?

Everyday

Some days

Not at all

L3. At any time in the past year, have you stopped smoking for one day or longer because you were trying to quit?

Yes

No

L4. Are you seriously considering quitting smoking in the next six months?

Yes

No

L5. How much do you agree or disagree with this statement: “Smoking behavior is something basic about a person that they can’t change very much.”

Strongly agree

Somewhat agree

Somewhat disagree

Strongly disagree

L6. In your opinion, do you think that some types of cigarettes are less harmful to a person’s health than other types?

Yes

No

Don’t know

L7. In your opinion, do you think that some smokeless tobacco products, such as chewing tobacco, snus and snuff are less harmful to a person’s health than cigarettes?

Yes

No

Don’t know

L8. Compared to people who smoke every day, do you think people who smoke just some days have less or more risk of getting health problems in their lifetime?

Much less risk

Less risk

About the same risk

More risk

Much more risk

L9. New types of cigarettes are now available called electronic cigarettes (also known as e-cigarettes or personal vaporizers). These products deliver nicotine through a vapor. Compared to smoking cigarettes, would you say that electronic cigarettes are …

Much less harmful,

Less harmful,

Just as harmful,

More harmful,

Much more harmful, or

I’ve never heard of electronic cigarettes

L10. Do you believe that the United States Food and Drug Administration (FDA) regulates tobacco products in the U.S.?

Yes

No

Don’t know

L11. About how long has it been since you completely quit smoking cigarettes?

Less than 1 month ago

3 months to less than 6 months ago

6 months to less than 1 year ago

1 year to less than 5 years ago

5 years to less than 15 years ago

15 years ago

L12. When you last smoked every day, how many cigarettes did you usually smoke each day?

1-9

10-19

20-29

30-39

40+

L13. On the average, how many cigarettes do you now smoke a day?

1-9

10-19

20-29

30-39

40+

L14. On the average, when you smoked during the past 30 days, about how many cigarettes did you smoke a day?

1-9

10-19

20-29

30-39

40+

L15. A hookah pipe (or shisha) is a large water pipe. People smoke tobacco using hookah pipes in groups at cafes or bars. Compared to smoking cigarettes, would you say that smoking tobacco using a hookah is…

Much less harmful,

Less harmful,

Just as harmful,

More harmful,

Much more harmful, or

I’ve never heard of Hookah

L16. How much do you think quitting cigarette smoking can help undo the harmful effects of smoking?

Not at all

A little

Some

A lot

L17. Other than quitting cigarette smoking, how much do you think each of the following might help someone who is currently smoking undo the harmful effects of smoking?

a. Exercising
b. Eating fruits and vegetables
c. Eating no saturated fats
d. Eating whole grains
e. Feeling guilty when you skip exercising
f. Eating organic foods
g. Taking vitamins
h. Getting screened for lung cancer
i. Using moisturizer
j. Wearing sunscreen
k. Sleeping at least 8 hours per night
l. Reducing stress

L18. Which statement best describes the rules about smoking inside your home?

Smoking is not allowed anywhere inside your home

Smoking is allowed some places or at some times

Smoking is allowed anywhere inside your home

There are no rules about smoking inside your home

L19. Which statement best describes the rules about smoking inside your home?

No one is allowed to smoke anywhere INSIDE YOUR HOME

Smoking is allowed in some places or at some times INSIDE YOUR HOME

Smoking is permitted anywhere INSIDE YOUR HOME

L20. To what extent do you believe the nicotine in cigarettes to be the chemical that causes most of the cancer caused by smoking?

Not at all

A little

Somewhat

Very much

Don’t know

X: Genomics & Family History

X1. Genetic tests that analyze your DNA, diet, and lifestyle for potential health risks are currently being marketed by companies directly to consumers. Have you heard or read about these genetic tests?

Yes

No <- GO TO X6

X2. From which of the following sources did you read or hear anything about genetic tests?

Please select all that Apply

Newspaper

Magazine.

Radio

Health professional

Family member

Social media

Television

Internet

Other

Have not heard of such test

Not sure

X3. Which of the following type(s) of genetic tests have you had?

Please select all that apply

Paternity testing: to determine if a man is the father of a child

Ancestry testing: to determine the background or geographic/ethnic origin of an individual’s ancestors

DNA fingerprinting: to distinguish between or match individuals using hair, blood, or other biological material

Cystic Fibrosis (CF) carrier testing: to determine if a person is at risk of having a child with cystic fibrosis;

BRCA 1/2 testing: to determine if a person has more than an average chance of developing breast cancer

Lynch syndrome testing: to determine if a person has more than an average chance of developing colon cancer

None of the above

Other-Specify

X4. Have you ever had a genetic test?

Yes

No

Not sure

X5. Do you have any first-degree relatives (mother, father, sibling, or child) who have been diagnosed with cancer in their lifetime?

Yes, specify:________

No

X6. If you had a genetic test, to whom did you communicate the results?

Mark all that Apply

Health professional

Family member

Friend

Other

Did not have this type of test

Did not communicate the results

X7. In the past year, have you read or heard about the importance of knowing your family’s health history for your own health?

Yes

No GO TO X9 below

X8. From which of the following sources have you read or heard anything about the importance of knowing your family’s health history?

Please select all that Apply

Newspaper

Magazine.

Radio

Health professional

Family member

Social media

Friends

Television

Internet

Other

Have not heard of Family History

Not sure

X9. Have you ever actively collected health information from your relatives for purposes of documenting your family’s health history?

Yes

No GO TO X11 on the next page

X10. Have you shared the family history information you collected with a health professional?

Please select only one

Yes

No

Not yet, but I plan to in the future

I have not collected family history

X11. How much do you think health behaviors like diet, exercise and smoking determine whether or not a person will develop each of the following conditions?

a. Diabetes/High blood sugar
b. Obesity
c. Heart disease
. High Blood Pressure/Hypertension
e. Cancer

X12. How much do you think genetics, that is characteristics passed from one generation to the next, determine whether or not a person will develop each of the following conditions?

a. Diabetes/High blood sugar
b. Obesity
c. Heart disease
d. High Blood Pressure/Hypertension
e. Cancer

X13. Health decisions are choices about your health such as which medication to take or whether to have surgery. Have you made a health decision in the last 12 months?

Yes

No

I’m not sure

X14. Think about the last time you made a health decision. Rate your agreement with each statement.

1-Strongly agree,

2-Somewhat agree,

3- Neither agree nor disagree,

4- Somewhat disagree,

5-Strongly disagree,

6- This does not apply to me]

1. I knew all of the treatment options that were available to me

2. I knew the benefits of each treatment option

3. I knew the risks and side effects of each treatment option

4. I was adequately informed about the issues important to my decision

5. I had information that applied to me, given my personal characteristics

6. I had information about health outcomes that matter to me

X15. In the past 12 months, have you helped the following people make a health decision?

[Response scale: 1-Yes, 2-No, 3-I’m not sure]

1. Spouse or partner

2. Parent

3. Child (less than 18 years old)

4. Child (18 years old or older)

5. Other family member

6. Friend or co-worker

7. Other (option free text: specify other)

X16. For each of the following organizations, please tell us if you had heard of it before being contacted for this study

[Response scale: 1-Yes, 2-No, 3-I’m not sure]

1. National Institutes of Health (NIH)

2. Patient Centered Outcomes Research Institute (PCORI)

3. Agency for Healthcare Research and Quality (AHRQ)

4. Food and Drug Administration (FDA)

5. Centers for Disease Control and Prevention (CDC)

X17. There are many different types of research studies. Which of the following have you heard about? (Check all that apply.)

7. Research studies in which patients try an experimental new treatment

8. Research studies that compare two or more treatments that are already used in clinical care to see which treatment works best

9. Research studies based on information from patients’ medical records

10. Research studies in which patients help the researchers choose what the study will be about

11. Research studies in which patients help researchers decide how to ask patients questions about their health

X18. More research studies on the best options for diagnosis and treatment are needed in order to improve my health decisions.

Response options:

1-Strongly agree,

2-Somewhat agree,

3- Neither agree nor disagree,

4- Somewhat disagree,

5-Strongly disagree

X19. How important are each of the following for improving health decision making?

Response scale:

1- Not at all important,

2- Slightly important,

3- Moderately important,

4- Very important ]

1. Research studies on the best options for diagnosis and treatment

2. Coordination between different health providers

3. More training for health care providers on the best options for diagnosis and treatment

4. More training for health care providers on how to help patients make health decisions

5. Patient advocacy for better health information

6. Better availability of places to get medical care in all parts of the country

7. Changes in national health policy

X20. Some patients work with researchers to plan health research studies.

Have you ever worked with researchers to plan a study for a medical condition that affects you?

Yes

No

I’m not sure

X21. Do you think you would ever be interested in working with researchers to plan a study for a medical condition that affects you?

Yes

No

I’m not sure

X22. How much do you agree with the following statements:

[Response options:

1-Strongly agree,

2-Somewhat agree,

3- Neither agree nor disagree,

4- Somewhat disagree,

5-Strongly disagree,

6-I’m not sure]

1. Including patients on research teams would improve the value of health research.

2. Including patients on research teams would improve health care.

X23. How valuable are each of the following aspects of research to you?

[Response options:

1-Very valuable,

2- Moderately valuable,

3- Slightly valuable,

4- Not at all valuable]

1. Answers questions that patients think are important

2. Answers questions that clinicians think are important

3. Evaluates outcomes that matter to patients

Helps patients make the best health decisions

O: You and Your Household

O1. What is your age?

Years old

X

O2. What is your current occupational status?

Mark only one.

Employed

Unemployed

Homemaker

Student

Retired

Disabled

Other-Specify

O3. Have you ever served on active duty in the U.S. Armed Forces, military Reserves or National Guard? Active duty does not include training in the Reserves or National Guard, but DOES include activation, for example, for the Persian Gulf War.

Yes, now on active duty

Yes, on active duty in the last 12 months but
not now

Yes, on active duty in the past, but not in the
last 12 months

GO TO O5

on the
next page

No, training for Reserves or
National Guard only

No, never served in the military

O4. In the past 12 months, have you received some or all of your health care from a VA hospital or clinic?

Yes, all of my health care

Yes, some of my health care

No, no VA health care received

O5. What is your marital status?

Married

Living as married

Divorced

Widowed

Separated

Single, never been married

O6. What is the highest grade or level of schooling you completed?

Less than 8 years

8 through 11 years

12 years or completed high school

Post high school training other than college
(vocational or technical)

Some college

College graduate

Postgraduate

O7. Were you born in the United States?

Yes   GO TO O10 below

No

O8. In what year did you come to live in the United States?

Year

O9. How well do you speak English?

Very well

Well

Not well

Not at all

X

O10. Are you of Hispanic, Latino/a, or Spanish origin? One or more categories may be selected.

Mark one or more.

No, not of Hispanic, Latino/a, or Spanish origin

Yes, Mexican, Mexican American, Chicano/a

Yes, Puerto Rican

Yes, Cuban

Yes, another Hispanic, Latino/a, or Spanish origin

O11. What is your race? One or more categories may be selected.

Mark one or more.

White

Black or African American

American Indian or Alaska Native

Asian Indian

Chinese

Filipino

Japanese

Korean

Vietnamese

Other Asian

Native Hawaiian

Guamanian or Chamorro

Samoan

Other Pacific Islander

O12. Including yourself, how many people live in your household?

Number of people

O13. Starting with yourself, please mark the sex, and write in the age and month of birth for each adult 18 years of age or older living at this address.

Sex

Age

Month Born
(01-12)

SELF

Male

Female

Adult 2

Male

Female

Adult 3

Male

Female

Adult 4

Male

Female

Adult 5

Male

Female

O14. How many children under the age of 18 live in your household?

Number of children under 18

O15. Do you currently rent or own your home?

Own

Rent

Occupied without paying monetary rent

O16. Does anyone in your family have a working cell phone?

Yes

No

O17. Is there at least one telephone inside your home that is currently working and is not a cell phone?

Yes

No

O18. Thinking about members of your family living in this household, what is your combined annual income, meaning the total pre-tax income from all sources earned in the past year?

$0 to $9,999

$10,000 to $14,999

$15,000 to $19,999

$20,000 to $34,999

$35,000 to $49,999

$50,000 to $74,999

$75,000 to $99,999

$100,000 to $199,999

$200,000 or more

O19. Are you deaf or do you have serious difficulty hearing?

Yes

No

O20. Are you blind or do you have serious difficulty seeing, even when wearing glasses?

Yes

No

O21. Because of a physical, mental or emotional condition, do you have serious difficulty concentrating, remembering or making decisions?

Yes

No

O22. Do you have serious difficulty walking or climbing stairs?

Yes

No

O23. Do you have difficulty dressing or bathing?

Yes

No

O24. Because of a physical, mental or emotional condition, do you have difficulty doing errands alone such as visiting a doctor’s office or shopping?

Yes

No

O25. About how long did it take you to complete the survey?

Write a number in one box below.

Minutes

Hours

X

X

O26. At which of the following types of addresses does your household currently receive residential mail?

Mark all that apply.

A street address with a house or building number

An address with a rural route number

A U.S. post office box (P.O. Box)

A commercial mail box establishment (such as Mailboxes R Us, and Mailboxes Etc.)

Please indicate below how much you think whether behaviors like diet, exercise and smoking as compared to a person’s genetic make-up determine whether or not a person will develop each of the following conditions by marking the appropriate box.

Example: In the example below, the respondent believes that behavior is a stronger determinant (but not the strongest) than genetics in developing diabetes and marked the appropriate box. (Note: A value of 3 would indicate that both behavior and genetics equally determine developing the disease).

Please indicate below whether a person's behaviors (like diet, exercise and smoking) or a person’s genetic makeup determine whether or not a person will develop each of the following conditions by marking the appropriate box.

Example: In the example below, the respondent believes that behavior is a somewhat stronger determinant than genetics in developing diabetes. (Note: A value of 3 would indicate that both behavior and genetics equally determine developing the disease).

Type II Diabetes/High Blood Sugar

Disease Primarily Determined by Behavior	21	22	23	24	25	Disease Primarily Determined by Genetics
		X

Type II Diabetes/High Blood Sugar

Disease Primarily Determined by Behavior	21	22	23	24	25	Disease Primarily Determined by Genetics

Hypertension (High Blood Pressure)

Disease Primarily Determined by Behavior	21	22	23	24	25	Disease Primarily Determined by Genetics

Obesity

Disease Primarily Determined by Behavior	21	22	23	24	25	Disease Primarily Determined by Genetics

Heart Disease

Disease Primarily Determined by Behavior	21	22	23	24	25	Disease Primarily Determined by Genetics

Cancer

Disease Primarily Determined by Behavior	21	22	23	24	25	Disease Primarily Determined by Genetics

Thank you!

Please return this questionnaire in the postage-paid envelope within 2 weeks.

If you have lost the envelope, mail the completed questionnaire to:

HINTS Study, TC 1046F

Westat

1600 Research Boulevard

Rockville, MD 20850

1