Form 1 Pilot Test Questionnaire and Debriefing Questionnaire

Questionnaire Cognitive Interviewing and Pretesting (NCI)

#10 HINTS Pilot_Attach B_E

#10 Sub-study "Health Information National Trends Survey 4 (HINTS 4) Pilot Test "

OMB: 0925-0589

Document [docx]
Download: docx | pdf

Attachment B: Questionnaire Versions 1 and 2 OMB No. 0925-0589-10

Expiration date: 5/31/11



HEALTH INFORMATION NATIONAL TRENDS SURVEY 4

(HINTS 4)



STATEMENT OF CONFIDENTIALITY

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). 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 30 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 (0925-0589-10). Do not return the completed form to this address.




VERSION 1

VERSION 2

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

Yes
No
Skip to 6

















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

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:) _____________


3. Did you look or go anywhere else?

Yes
No

2a. When you need health or medical information, do you usually get it from…



Yes

No

a.

Books?

___

___

b.

Brochures, pamphlets, etc.?

___

___

c.

Cancer organization?

___

___

d.

Family?

___

___

e.

Friend/co-Worker?

___

___

f.

Doctor or health care provider?

___

___

g.

Internet?

___

___

h.

Library?

___

___

i.

Magazines?

___

___

j.

Telephone information number?

___

___

k.

Complementary, alternative, or unconventional practitioner?

___

___

l.

Some other source?

___

___


2b. The most recent time you looked for information about health or medical topics, where did you go first? PICK 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:) _____________


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

Yes
No

4. 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

5. 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?



Strongly Agree

Somewhat

Agree

Somewhat

Disagree

Strongly

Disagree

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.

___

___

___

___








6. 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

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



A lot

Some


A little


Not at all

a.

A doctor

___

___

___

___

b.

Family or friends

___

___

___

___

c.

Newspapers or magazines

___

___

___

___

d.

Radio

___

___

___

___

e.

The internet

___

___

___

___

f.

Television

___

___

___

___

g.

Government health agencies

___

___

___

___

h.

Charitable organizations

___

___

___

___

i.

Religious organizations and leaders

___

___

___

___


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


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:) _____________

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


Yes
No

10. The most recent time you looked for cancer information, where did you go first?

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:) _____________


11. The most recent time you looked for information about cancer who was it for…

Myself
Someone else
Both myself and someone else


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

Yes Skip to 14
No


13. Which of the following, if any, are the reasons you do not access the Internet?

__ I do not have time to use the Internet.

__ I do not think the Internet is a good use of my time.

__ I do not have access to a computer.

__ I do not have Internet access.

__ I do not feel comfortable using computers.

__ I do not feel comfortable using the Internet.

__ I find the content on the Internet disturbing.

__ I don't like the Internet.

__ I am worried about privacy issues on the Internet.

__ I am worried about Internet fraud or theft.

__ I think the Internet is dangerous.

Go to question 21 on page 9




13. Which of the following, if any, are the reasons you do not access the Internet?

Yes No

a. I do not have time to use the Internet. ___ ___

b. I do not think the Internet is a good use of my time ___ ___

c. I do not have access to a computer. ___ ___

d. I do not have Internet access. ___ ___

e. I do not feel comfortable using computers. ___ ___

f. I do not feel comfortable using the Internet. ___ ___

g. I find the content on the Internet disturbing. ___ ___

h. I don't like the Internet. ___ ___

i. I am worried about privacy issues on the Internet. ___ ___

j. I am worried about Internet fraud or theft. ___ ___

k. I think the Internet is dangerous. ___ ___

Go to question 21 on page 9





14. Where do you use the Internet?

__ Home
__ Work
__ School
__ Public Library
__ Community Center
__ Someone else's house
__ Some other place

14. Do you use the Internet at. . .

Yes No

a. Home? ___ ___

b. Work? ___ ___

c. School? ___ ___

d. Public library? ___ ___

e. Community Center? ___ ___

f. Someone else’s house? ___ ___

g. Some other place? ___ ___

15. When you use the Internet at home, do you mainly access it through...

__ Do not use the Internet at home
__ A regular ‘dial-up’ telephone line
__ Broadband (such as DSL, cable, FiOS)
__ Mobile wireless broadband (such as a 4G network)
__ Something else (specify): _______________

16. In the past 12 months, have you used the Internet to look for health or medical information for yourself?

Yes
No


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

Yes

No Skip to 19


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

__________________________________________________________________________________

19. Below are some ways people use the Internet. Some people have done these things, but other people have not. Please tell us whether or not you have done each of these things while using the Internet in the past 12 months.



Yes

No

a.

Looked for information about quitting smoking?

___

___

b.

Bought medicine or vitamins on-line?

___

___

c.

Participated in an on-line support group for people with a similar health

or medical issue?

___

___

d.

Used e-mail or the Internet to communicate with a doctor or a doctor's office?

___

___

e.

Used a website to help you with your diet, weight, or physical activity?

___

___

f.

Looked for a healthcare provider?

___

___

g.

Downloaded to a mobile device, such as an MP3 player, cell phone,

tablet computer, or electronic book device?

___

___

h.

Visited a "social networking" site, such as "Facebook" or "LinkedIn"?

___

___

I

Wrote in an online diary or "blog" (i.e., Web log)?

___

___

j.

Kept track of personal health information, such as care received,

test results, or upcoming medical appointments?

___

___

k.

Looked for health or medical information for someone else?

___

___


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



Yes

No

a.

Looked for information about quitting smoking?

___

___

b.

Bought medicine or vitamins on-line?

___

___

c.

Participated in an on-line support group for people with a similar health or medical issue?

___

___

d.

Used e-mail or the Internet to communicate with a doctor or a doctor's office?

___

___

e.

Used a website to help you with your diet, weight, or physical activity?

___

___

f.

Looked for a healthcare provider?

___

___

g.

Downloaded to a mobile device, such as an MP3 player, cell phone, tablet computer, or electronic book device?

___

___

h.

Visited a "social networking" site, such as "Facebook" or "LinkedIn"?

___

___

I

Wrote in an online diary or "blog" (i.e., Web log)?

___

___

j.

Kept track of personal health information, such as care received, test results, or upcoming medical appointments?

___

___

k.

Looked for health or medical information for someone else?

___

___


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

Yes (Specify:) ___________________________

No

21. 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


22. Do you have any of the following healthcare coverage options:



Yes

No

a.

Insurance through a current or former employer or union (of you or another family member)

___

___

b.

Medicare

___

___

c.

Medicaid, Medical Assistance, or any kind of government-assistance plan for those with low incomes or a disability

___

___

d.

TRICARE or other military health care

___

___

e.

VA (including those who have ever used or enrolled for VA health care)

___

___

f.

Indian Health Service

___

___


23. Do you have any other health care coverage option?

Yes (Specify): ___________________
No

24. 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

25. 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 Skip to 31

1 Time
2 Times
3 Times
4 Times
5-9 Times
10 or More Times

26. 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


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

Excellent
Very Good
Good
Fair
Poor

28. 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?



Always

Usually


Sometimes


Never

a.

Give you the chance to ask all the health-related questions you had?

___

___

___

___

b.

Listen carefully to you?

___

___

___

___

c.

Give the attention you needed to your feelings and emotions?

___

___

___

___

d.

Involve you in decisions about your health care as much as you wanted?

___

___

___

___

e.

Make sure you understood the things you needed to do to take care of your health?

___

___

___

___

f.

Explain things in a way you could understand?

___

___

___

___

g.

Spend enough time with you?

___

___

___

___

h.

Show respect for what you had to say?

___

___

___

___

i.

Help you deal with feelings of uncertainty about your health or health care?

___

___

___

___


28. In the last 12 months, when talking with your doctors, nurses or other health professionals, how often did they . . .



Always

Usually


Sometimes


Never

a.

Give you the chance to ask all the health-related questions you had?

___

___

___

___

b.

Listen carefully to you?

___

___

___

___

c.

Give the attention you needed to your feelings and emotions?

___

___

___

___

d.

Involve you in decisions about your health care as much as you wanted?

___

___

___

___

e.

Make sure you understood the things you needed to do to take care of your health?

___

___

___

___

f.

Explain things in a way you could understand?

___

___

___

___

g.

Spend enough time with you?

___

___

___

___

h.

Show respect for what you had to say?

___

___

___

___

i.

Help you deal with feelings of uncertainty about your health or health care?


___

___

___

___


29. 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
Skip to 31


30. 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


31. 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


32. In the past 12 months, have you tried to do any of the following?

YES NO NA

a. Reduce the amount of fat in your diet ___ __ ___

b. Increase the amount of fruit or vegetables that you eat ___ __ ___

c. Increase the amount of physical activity or exercise that you get ___ __ ___

d. Reduce the amount of sugar-sweetened beverages that you consume ___ __ ___

e. Reduce the amount of sugar in your diet ___ __ ___

f. Reach or maintain a healthy weight ___ __ ___

g. Reduce your stress level ___ __ ___

h. Get more sleep or improve the quality of your sleep ___ __ ___

i. Reduce your intake of alcoholic beverages ___ __ ___

j. Quit smoking ___ __ ___


32. In the past 12 months, have you tried to do any of the following?

YES NO

a. Reduce the amount of fat in your diet ___ __

b. Increase the amount of fruit or vegetables that you eat ___ __

c. Increase the amount of physical activity or exercise that you get ___ __

d. Reduce the amount of sugar-sweetened beverages that you consume ___ __

e. Reduce the amount of sugar in your diet ___ __

f. Reach or maintain a healthy weight ___ __

g. Reduce your stress level ___ __

h. Get more sleep or improve the quality of your sleep ___ __


32i. In the past 12 months have you tried to reduce your intake of alcoholic beverages?

__ Yes

__ No

__ I don’t drink alcoholic beverages


33. These next questions are about the food eaten in your household in the last 12 months and whether you were able to afford the food you need.


Please read the following statements and indicate whether the statement was OFTEN, SOMETIMES, or NEVER true for you or anyone else in the household in the last 12 months.

Often True Sometimes True Never True Not Sure

a. The food that we bought just didn't last, and we didn't have money to get more.

b. We couldn't afford to eat balanced meals.

c. At least one person in our household had to cut the size of our meals or skip meals because there wasn't enough money for food.

d. At least one person in our household ate less than they  felt they should because there wasn't enough money to buy food.

e. At least one person in our household was  hungry but didn't eat because we couldn't afford enough food.


33. 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



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

__ Always

__ Often

__ Sometimes

__ Rarely

__ Never

35. How useful do you find the menu information on calories posted in restaurants?

__ Extremely useful

__ Very useful

__ Moderately useful

__ Slightly useful

__ Not at all useful

36. During the past month, how often did you drink 100% pure fruit juice such as orange, mango, apple, grape, and pineapple juices. Do not include fruit-flavored drinks with added sugar or fruit juice you made at home and added sugar to.

Never

1 time last month

2-3 times last month

1 time per week

2 times per week

3-4 times per week

5-6 times per week

1 time per day

2-3 times per day

4-5 times per day

6 or more times per day

37. During the past month, how often did you eat fruit? Include fresh, frozen or canned fruit. Do not include juices.

Never

1 time last month

2-3 times last month

1 time per week

2 times per week

3-4 times per week

5-6 times per week

1 time per day

2-3 times per day

4-5 times per day

6 or more times per day


  1. During the past month, how often did you eat any kind of fried potatoes, including French fries, home fires, or hash brown potatoes? Do not include potato chips?

Never

1 time last month

2-3 times last month

1 time per week

2 times per week

3-4 times per week

5-6 times per week

1 time per day

2-3 times per day

4-5 times per day

  1. or more times per day

  1. During the past month, how often did you eat vegetables, including lettuce salads, potatoes (not fried), and all other vegetables? Do not include fried potatoes or potato chips.

Never

1 time last month

2-3 times last month

1 time per week

2 times per week

3-4 times per week

5-6 times per week

1 time per day

2-3 times per day

4-5 times per day

6 or more times per day

  1. During the past month, how often did you eat refried beans, baked beans, beans in soup, pork and beans or any other type of cooked dried beans? Do not include green beans.

Never

1 time last month

2-3 times last month

1 time per week

2 times per week

3-4 times per week

5-6 times per week

1 time per day

2-3 times per day

4-5 times per day

6 or more times per day

  1. During the past month, how often did you drink regular soda or pop that contains sugar? Do not include diet soda.

Never

1 time last month

2-3 times last month

1 time per week

2 times per week

3-4 times per week

5-6 times per week

1 time per day

2-3 times per day

4-5 times per day

6 or more times per day

42. 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 Skip to 44
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

42. How many days in a typical week do you exercise at least at a moderate level, making you breathe somewhat harder than normal?

None Skip to 44
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


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

Hours : minutes
|__|__|: |__|__|

44. In a typical week, how many days do you do leisure-time physical activities specifically designed to strengthen your muscles such as lifting weights or doing calisthenics?

None Skip to 46
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


45. What activities do you typically do to strengthen your muscles?

_________________________________________

_________________________________________


46. Over the past 30 days, on average how many hours per day did you sit and watch TV/movies or use a computer game console? Do not include “active gaming” such as Wii
|__|__| Hours per day

47. About how tall are you without shoes?

|__|__|.|__|__|
feet . inches

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

|__|__|__|Lbs.

49. 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

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

Always
Often
Sometimes
Rarely
Never
Do not go out on sunny day

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

Yes
No
Skip to 53

52. How often do you now smoke cigarettes...

Everyday
Some days
Not at all

52. How often do you now smoke cigarettes...

Everyday
Some days
Not at all


52B. In the past 12 months have you quit or tried to quit smoking?

Yes

No

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

No one is allowed to smoke anywhere inside your house

Smoking is allowed in some places or at some times inside your house

Smoking is permitted anywhere inside your house

54. A drink of alcohol is 1 can or bottle of beer, 1 glass of wine, 1 can or bottle of wine cooler, 1 cocktail, or 1 shot of liquor. During the past 30 days, how many days per week did you have at least one drink of any alcoholic beverage?

0 days
1 day
2 days
3 days
4 days
5 days
6 days
7 days

55. During the past 30 days, on the days when you drank, about how many drinks did you drink on the average?

I___I___I drinks


56. On the average, how many hours of sleep do you get in a 24-hour period? Think about the time you actually spend sleeping or napping, not just the amount of sleep you think you should get?


|__|__| number of hours

56. How much sleep do you usually get during a typical night….

Hours : Minutes

a) On a workday or school day? |__|__|:|__|__|

b) On a non-work or non-school day (i.e., weekend)? |__|__|:|__|__|


57. There are situations where people provide regular care or assistance to a family member or friend who is elderly or has a long-term illness or disability. During the past month, did you provide any such care or assistance to a family member or friend who is 60 years of age or older?

Yes

No

58. Are you male or female?

Male Skip to 64
Female

59. 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 Skip to 61

60. Before you had the Pap test, did you and a doctor or other health care professional talk about it?

No, we have not talked about the Pap test

Yes, we talked before I had the Pap test

Yes, we talked but not until after I had the Pap test

Not sure

60. When did you and a doctor or other health care professional talk about your Pap test, if ever?

Yes No Not sure

  1. Before having the Pap test? ___ ___ ___

  2. After having the Pap test? ___ ___ ___

61. A mammogram is an x-ray of each breast to look for cancer. 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 Skip to 63

62. Before you had the mammogram, did you and a doctor or other health care professional talk about it?

No, we have not talked about the mammogram

Yes, we talked before I had the mammogram

Yes, we talked but not until after I had the mammogram

Not sure

GO TO Q64

62. When did you and a doctor or other health care professional talk about your mammogram, if ever?

Yes No Not sure

  1. Before having the mammogram? ___ ___ ___

  2. After having the mammogram? ___ ___ ___

GO TO Q64

63. Have you and a doctor or other health care professional talked about mammograms?

Yes

No

64. 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

Not sure

65. Have you ever had a test 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.

Yes

No, I have never had any test to look for colon cancer Skip to 67

66. Before you had the test, did you and a doctor or other health care professional talk about the different tests that are used to look for colorectal cancer?

No, we have not talked about tests to look for colorectal cancer

Yes, we talked before I had a test to look for colorectal cancer

Yes, we talked but not until after I had a test to look for colorectal cancer

Not sure

GO TO Q68

66. When, if ever, did you and a doctor or other health care professional talk about the tests that are used to look for colorectal cancer?

Yes No Not sure

  1. Before having the test? ___ ___ ___

  2. After having the test? ___ ___ ___

GO TO Q68

67. Have you and a doctor or other health care professional talked about any of the different tests that are used to look for colorectal cancer?

Yes

No

68. (Only males need to answer this question.) 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 Skip to 70

Not sure Skip to 70

69. Before you had the PSA test, did you and a doctor or other health care professional talk about the test?

No, we have not talked about the PSA test

Yes, we talked before I had the PSA test

Yes, we talked but not until after I had the PSA test

Not sure


GO TO Q71

69. When, if ever, did you and a doctor or other health care professional talk about the PSA test?

Yes No Not sure

  1. Before having the test? ___ ___ ___

  2. After having the test? ___ ___ ___

GO TO Q71


70. Did you and a doctor or other health care professional talk about the PSA test?

Yes

No

71. Has a doctor or other health care professional ever told you that some doctors recommend the PSA test and others do not?

Yes

No

Don’t know

72. Has a doctor or other health care professional ever told you that no one is sure if using the PSA test actually saves lives?

Yes

No

Don’t know

TShape1 his section contains several questions about cancer. For each, try to think about cancer in general when answering.

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

___ Strongly agree

___ Somewhat agree

___ Somewhat disagree

___ Strongly disagree








74. How likely do you think it is that you will develop cancer in the future?

Very low
Somewhat low
Moderate
Somewhat high
Very high

75. How often do you worry about getting cancer?

Rarely or never
Sometimes
Often
All the time

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



Strongly Agree

Somewhat

Agree

Somewhat

Disagree

Strongly

Disagree

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.

___

___

___

___


77. Have you ever been diagnosed as having cancer?

Yes
No
Skip to 83


78. What type of cancer did you have?

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, other

Stomach cancer

Other (Specify): ___________

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

[ENTER AGE.]
|__|__|__|

80. Did you ever receive any treatment for your cancer?

Yes
No
Skip to 83

81. Which of the following cancer treatments have you ever received?



Yes

No

a.

Chemotherapy (pills)

___

___

b.

Chemotherapy (intravenous)

___

___

c.

Radiation

___

___

d.

Surgery

___

___

e.

Other


___

___


82. Are you currently receiving cancer treatment?

___ Yes skip to Q83

___ No


82B. About when did you finish your most recent cancer treatment?

___ In the last 12 months

___ More than 1 year ago but less than 2 years ago

___ 2 or more years ago, but less than 5 years ago

___ 5 or more years ago, but less than 10 years ago

___ 10 or more years ago, but less than 15 years ago

___ 15 or more years ago

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

Yes
No
No Family

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

Excellent
Very Good
Good
Fair
Poor

85. How often did you feel each of the following during the past 30 days?



All of the time

Most of the time

Some of the time

A little of the time

None of the time

a.

So sad that nothing could cheer you up

___

___

___

___

___

b.

Nervous

___

___

___

___

___

c.

Restless or fidgety

___

___

___

___

___

d.

Hopeless

___

___

___

___

___

e.

That everything was an effort

___

___

___

___

___

f.

Worthless

___

___

___

___

___


The next questions ask about different sources of information you may have seen about the foods you eat, the medications you take, and any medical products you use.

86. How much do you agree or disagree with the following statements:



Strongly agree

Agree

Neither agree nor disagree

Disagree

Strongly disagree

a.

I can easily find information about the foods I eat.

___

___

___

___

___

b.

The information I get about the foods I eat is clear and understandable.

___

___

___

___

___

c.

The information I get about the foods I eat is not helpful for making food choices.

___

___

___

___

___


87. The next set of questions asks for your opinion about the information you get about the benefits of the drugs you take regularly.



Strongly agree

Agree

Neither agree nor disagree

Disagree

Strongly disagree

a.

I can easily find information about the benefits of the drugs I regularly take.

___

___

___

___

___

b.

The information I get about the benefits of the drugs I regularly take is clear and understandable.

___

___

___

___

___

c.

The information I get about drug benefits does not usually help me make decisions about whether or not to start taking a drug.

___

___

___

___

___


88. The next set of questions asks for your opinion about the information you get about the risks of the drugs you take regularly.



Strongly agree

Agree

Neither agree nor disagree

Disagree

Strongly disagree

a.

I can easily find information about the risks of the drugs I regularly take.

___

___

___

___

___

b.

The information I get about the risks of the drugs I regularly take is clear and understandable.

___

___

___

___

___

c.

The information I get about drug risks does not usually help me make decisions about whether or not to start taking a drug.

___

___

___

___

___


89. How much do you agree or disagree with the following statements...



Strongly agree

Agree

Neither agree nor disagree

Disagree

Strongly disagree

a.

Over-the-counter drugs are safer than prescription drugs.

___

___

___

___

___

b.

Over-the-counter drugs are less effective than prescription drugs.

___

___

___

___

___


90. The first time a doctor prescribes a drug for you, how often do you read the information leaflet that comes with the drugs?

Always
Often
Sometimes
Rarely
Never

91. How much do you agree or disagree with the following statement:

The information leaflet for prescription drugs is easy to understand.

Strongly agree
Agree
Neither agree nor disagree
Disagree
Strongly disagree

92. In the past year, the first time you use a home medical product such as contact lenses, blood pressure cuffs, glucose test kits, and pregnancy test kits, how frequently did you read the information leaflet that came with it?

Always
Often
Sometimes
Rarely
Never

93. How much do you agree or disagree with the following statement:

The information leaflets that come with the medical products I use in my home are easy to understand.

Strongly agree
Agree
Neither agree nor disagree
Disagree
Strongly disagree

94. The following questions ask about advertisements for prescription drugs.

Strongly Agree, Agree, Neither agree nor disagree, Disagree, Strongly disagree








a.

Advertisements for prescription drugs do not give enough information about the possible benefits of using the medication.






b.

Advertisements for prescription drugs give enough information about the negative side-effects of using the drug.







94. The following questions ask about advertisements for prescription drugs.

Strongly Agree, Agree, Neither agree nor disagree, Disagree, Strongly disagree








a.

Advertisements for prescription drugs give enough information about the possible benefits of using the medication.






b.

Advertisements for prescription drugs do not give enough information about the negative side-effects of using the drug.







95. The following questions ask about advertisements for over-the-counter drugs.

Strongly Agree, Agree, Neither agree nor disagree, Disagree, Strongly disagree








a.

Advertisements for over-the-counter drugs give enough information about the possible benefits of using the drug.






b.

Advertisements for over-the-counter drugs do not give enough information about the negative side-effects of using the drug.







96. The following questions ask about advertisements for commonly used medical products such as inhalers, glucose test kits and contact lenses. Strongly Agree, Agree, Neither agree nor disagree, Disagree, Strongly disagree















a.

Advertisements for commonly used medical products do not give enough information about the possible benefits of using these products.






b.

Advertisements for commonly used medical products give enough information about the negative side-effects of using these products.







96. The following questions ask about advertisements for commonly used medical products such as inhalers, glucose test kits and contact lenses. Strongly Agree, Agree, Neither agree nor disagree, Disagree, Strongly disagree















a.

Advertisements for commonly used medical products give enough information about the possible benefits of using these products.






b.

Advertisements for commonly used medical products do not give enough information about the negative side-effects of using these products.







97. The next two questions are about Drug Facts labels. When you purchase over-the-counter drugs for the first time, how frequently do you read the Drug Facts label?

Always
Often
Sometimes
Rarely
Never

98. How much do you agree with the following statement:

The Drug Facts label on over-the-counter drugs is easy to understand.

Strongly agree
Agree
Neither agree nor disagree
Disagree
Strongly disagree

99. What would you do if a drug you used was recalled? Would you:

Stop taking it at once
Keep using the drug/Pay no attention to the recall
Contact the manufacturer
Go on the manufacturer’s website
Contact your doctor/nurse/other medical professional
Talk to my pharmacist
Be on my guard/keep using it
Unsure
Other (please specify:) _________________

99. What would you do if a drug you used was recalled? Would you:

Yes No

Stop taking it at once
Keep using the drug/Pay no attention to the recall
Contact the manufacturer
Go on the manufacturer’s website
Contact your doctor/nurse/other medical professional
Talk to my pharmacist
Be on my guard/keep using it
Unsure
Other (please specify:) _________________

100. You may have heard about some recent recalls on medical products like gel-filled teethers, automated external defibrillators, stents, pacemakers or infant apnea monitors. What would you do if a medical product you use was recalled?


Have it removed/stop using it
Contact my doctor
Contact the manufacturer
Have it replaced/Find a substitute
Keep using it/Keep it
Make no change
Other (please specify:) _____________
Unsure

100. You may have heard about some recent recalls on medical products like gel-filled teethers, automated external defibrillators, stents, pacemakers or infant apnea monitors. What would you do if a medical product you use was recalled? Would you…

Yes No

Have it removed/stop using it
Contact my doctor
Contact the manufacturer
Have it replaced/Find a substitute
Keep using it/Keep it
Make no change
Other (please specify:) _____________
Unsure

101. In the past six months, did you visit the Food & Drug Administration’s website (www.fda.gov)?

Yes Skip to Q103
No

102. Why haven’t you visited the FDA’s website?

I

Skip to Q105

don’t own a computer (no Internet access)

I don’t have a reason to visit the site

I prefer other sites

I didn’t know about the FDA site

I don’t trust government websites

I don’t trust the FDA

It’s too hard to find information on the FDA website

Other (please specify):_______





102. Why haven’t you visited the FDA’s website? Is it because…

Yes No

I

Skip to Q105

don’t own a computer (no Internet access)
I don’t have a reason to visit the site
I prefer other sites
I didn’t know about the FDA site
I don’t trust government websites
I don’t trust the FDA
It’s too hard to find information on the FDA website
Other (please specify):_______



103. On your most recent visit, did you find the information you were looking for?

Yes
No

104. How easy or hard was it to find the information you were looking for?

Very easy
Easy
Neither easy nor hard
Hard
Very hard

105. In general, I think that the information I give doctors is safely guarded.

Strongly agree
Somewhat agree
Somewhat disagree
Strongly disagree

106. 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 Go to Q109

SIMPLIFIED WORDING


106. Clinical trials are research studies with people that test how well new medical treatments work compared to the standard care people get now. Have you ever heard of a clinical trial?

Yes
No -> Go to Q109

107. Have you participated in a clinical trial?

Yes

No

107. Have you participated in a clinical trial?

Yes
No

Not sure

108. Would you be willing to participate in a clinical trial?

Yes

No

Not sure

109. As far as you know, do your healthcare providers maintain your medical information in a portable, electronic format?

Yes
No

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



Very Important

Somewhat Important

Not at all Important


a.

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

___

___

___


111. Please indicate how much you agree or disagree with the following statement.

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

Strongly agree
Somewhat agree
Somewhat disagree
Strongly disagree

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

Yes
No

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

Yes
No

114. What is your age?

[ENTER AGE.]
|__|__|__|

115. What is your current occupational status?

Employed
Unemployed
Homemaker
Student
Retired
Disabled
Other (Specify:) ______________

116. 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

No, training for Reserves or National Guard only

No, never served in the military

117. What is your marital status?

Married
Living as Married
Divorced
Widowed
Separated
Single, Never Been Married

118. 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

119. Were you born in the United States?

Yes Skip to 123
No

120. Are you a citizen of the United States?

Yes Skip to 122
No
Application Pending

121. Are you a permanent resident with a green card / permanent residence authorization?

Yes
No
Application Pending

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

[ENTER YEAR]
|__|__|__|__|

123. How comfortable do you feel speaking English?

Completely comfortable
Very comfortable
Somewhat comfortable
A little comfortable
Not at all comfortable

124. Are you Hispanic or Latino?

Yes
No

125. Which one or more of the following would you say is your race? MARK ALL THAT APPLY.

American Indian / Alaska Native
Asian
Black / African American
Native Hawaiian / Other Pacific Islander

White

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

[ENTER NUMBER.]
|__|__|

127. Please mark the gender and write in the age of each adult 18 years of age or older living at this address.


Gender

Age

1

  • Male

  • Female


2

  • Male

  • Female


3

  • Male

  • Female


4

  • Male

  • Female


5

  • Male

  • Female



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

[ENTER NUMBER.]
|__|__|

129. 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

130. Do you currently rent or own your home?

Own
Rent
Occupied Without Paying Monetary Rent

131. Did you complete this survey all in one sitting, or did you do it in more than one sitting?

I completed the survey all in one sitting

I completed the survey in more than one sitting.

132. Did anyone help you complete this survey?

Yes

No

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

Minutes Hours

|__|__ | |__|__|

134. 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 are Us, Mailboxes, Etc.)

STATEMENT OF CONFIDENTIALITY

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). 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 10 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 (0925-0589-10). Do not return the completed form to this address.













HINTS 4 Pilot Test

Respondent Debriefing


ID # ________

Respondent Selection version ______________________________

Questionnaire method_______________________

Mailing _________________


INTRODUCTION

Hello, I’m (name) calling from Westat. I’m calling to speak with the person who recently completed a survey for us. It was a survey completed on health and was from the federal government. Would that be you?


When would be a convenient time to contact {NAME/the person who completed the survey}?

[IF DO NOT HAVE NAME: Who should I ask for when I call back?__________________]


WHEN THE RESPONDENT COMES TO THE PHONE

Hello, I understand that you completed a health survey a few weeks ago. We have a few questions about the survey. Could we talk to you about these for about 10 minutes?


IF YES

We are calling to try to find out about how you completed the survey. This information will help us improve the survey. This is a research project and your participation is voluntary. You can stop at any time and you can skip any question you wish. We expect this to take less than 10 minutes.


Everything that we cover here will be kept private under the Privacy Act. I would also appreciate your permission to audio record this conversation. The recording will be for note-taking purposes only. This allows me to listen to what you say and not try to write down what you are saying.


[IF RESPONDENT AGREES, START RECORDER] I have started the recorder. Do I have your permission to record our discussion?




START OF DEBRIEFING


1. Think back to when you first learned about the survey. Did you open the envelope when the survey arrived in the mail or did someone else in the household?


Respondent Go to Question 2


Someone else Go to Question 8



2. (if Q1=Respondent) What made you open the mail packet (as opposed to throwing it away)?



Do you generally get the mail?



3. What do you remember about the envelope or mailing materials?



Can you tell me what came inside the packet (questionnaire, letter, incentive)?



4. [IF DID NOT MENTION LETTER] Was there a letter that came with the survey?



5. Could you tell me what you remember about the letter?



Would you say you read the letter or did you skip it?


6. What are the things you remember the most about the materials that came in the (first) mail packet?



Why is that important to you?



7. How did you decide who should fill out the survey?




Go To Question 10



8. (if Q1=Someone else) How did you find out about the survey? Did someone give it to you?



9. Why were you asked to complete the survey?



10. Did you fill it out as soon as you found out about it? (if no) How long did you wait before you filled it out?



Now, I want to talk a little about the questionnaire you completed


11. Do you recall how long it took you to fill out?




12. Could you tell me what you remember about the questions you answered?





13. Were there any questions that you found particularly difficult to answer?

Were there questions that were hard to understand?



14. What about the instructions and directions on the survey. What did you think of these?

Did you have any problems figuring out which question you should answer next?

Did you have any problems with the written instructions?




15. Now that you know what is on the survey, how would you describe what the survey is about?




16. How do you think your information will be used?






17. Would you do it again? Why (Why not)?





Do you have any questions for me?




Thank you very much for your time.


7


File Typeapplication/vnd.openxmlformats-officedocument.wordprocessingml.document
AuthorTerisa Davis - Health Studies
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File Created2021-02-02

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