Form 0920-18AWP High Risk Follow-up Survey

Form Approved

OMB No. 0000-0000

Exp. Date 00/00/201X

Attachment 3d:

High Risk Follow-Up Survey

Public reporting burden of this collection of information is estimated to average 25 minutes per response, including the time for reviewing instructions, searching existing data sources, gathering and maintaining the data needed, and completing and reviewing the collection of information. An agency may not conduct or sponsor, and a person is not required to respond to a collection of information unless it displays a currently valid OMB control number. Send comments regarding this burden estimate or any other aspect of this collection of information, including suggestions for reducing this burden to CDC/ATSDR Information Collection Review Office, 1600 Clifton Road NE, MS D-74, Atlanta, Georgia 30333; ATTN: PRA (0920-XXXX).

HIGH-RISK FOLLOW UP WEB QUESTIONNAIRE16.ll continue to refine the draft questionnaire for submission to CDC by April 13th ulation Survey.

WINTRO_1 Thank you for agreeing to participate in our study!

Please use the “Next” and “Back” buttons to navigate between the questions within the questionnaire. Do not use your browser buttons.

If at any time during the survey, you would like to exit, please use the “Save & Exit” button above. Using this button will save all of the data you have already entered and ensure you are able to return to the same location to complete the survey.

WEBINEM1/WEBINEM2/WEBINPH1/WEBINPH2

In case you need to exit the survey and complete it at a later time or you get disconnected, please [enter/confirm] your email address so we can send you a link to re-access the survey.

Please enter your email address:

Please reenter your email address:

Prefer not to answer

<Programmer Note: If respondent was recruited by email, please autofill

email address here. If accessing from email, use “confirm” else use “enter” >

<Programmer: If respondent logging back into survey>

WINTRO_2 Welcome Back!

Please use the “Next” and “Back” buttons to navigate between the questions within the questionnaire. Do not use your browser buttons.

If at any time during the survey, you would like to exit, please use the “Save & Exit” button above. Using this button will save all of the data you have already entered and ensure you are able to return to the same location to complete the survey.

Continue from where I left off

Section I. General Health

Thank you for your [continued] participation in this important study! For this [follow up] survey, we will start by asking you a few questions about your health.

<Programmer Note: use autofills if respondent recruited by email>

1. In general, how is your health? Would you say it is…?

Excellent

Very good

Good

Fair

Poor

Prefer not to answer

2. CANCER (NHIS – CANEV). Have you EVER been told by a doctor or other health professional that you have had cancer or a malignancy of any kind?

Yes

No

Don’t know

Prefer not to answer

<Programmer: If CANCER = Yes, continue to CANCERTYPE. Else, continue to YNMOM.>

3. CANCERTYPE (NHIS) What kind of cancer was it?

4. DIAGNOSIS (NHIS) How old were you when you were first diagnosed?

____ years

Section II. Family Communication

The following questions will ask about your communication with family members.

5. ADOPT. Are you adopted?

Yes

No

Prefer not to answer

6. Are your biological parents still living? By biological, we mean related by blood.

<Programmer Note: Put two items on same screen>.

YNMOM Mother

Living

Deceased

Don’t Know

Prefer not to answer

YNDAD Father

Living

Deceased

Don’t Know

Prefer not to answer

7. RELATLIV2. For the following biological or blood relatives, please enter the number that are living and the number who may have died. If you do not have the relative listed, please mark Not Applicable.

<Programmer Note: Show this list of relatives on a new screen. There should be only one relative at a time on each screen with the three response items>

Living Deceased Not Applicable

YNSISTER Full Sister(s)

YNHSISTER Half Sister(s)

YNBROTHER Full Brother(s)

YNHBROTHER Half Brother(s)

YNDAUGHTER Daughter(s)

YNSON Son(s)

YNGRANDP Grandparent(s)

YNGRANDC Grandchild(ren)

YNUNCLE Uncle(s)

YNAUNT Aunt(s)

YNCOUSIN Cousin(s)

<Programmer Note: If YNSON living=0, then skip SONSAGE>

8. SONSAGE. How many biological sons do you have in the following age ranges?

0-5

6-12

13-17

18 or older

Don’t know

Prefer not to answer

<Programmer Note: If YNDAUGHTER living=0, then skip DAUGHTERSAGE>

9. DAUGHTERSAGE. How many biological daughters do you have in the following age ranges?

0-5

6-12

13-17

18 or older

Don’t know

Prefer not to answer

Section III. Genetic Counseling

10. COUNSELING (NHIS 2015 - GCEVER). These next few questions refer to genetic counseling for cancer risk. Genetic counseling involves a discussion with a specially trained health care provider about your family history of cancer and how likely you are to develop cancer. It may also include a discussion about whether genetic testing is right for you.

Have you ever received genetic counseling for cancer risk?

Yes

No

Don’t know

Prefer not to answer

<Programmer: If COUNSELING=Yes, go to COUNSELINGSATISFIED. Else Skip to FLEARN>

11. COUNSATISFIED (NIEHS) How satisfied are you with the communication you

have had with your genetic counselor about your cancer risk?

Very satisfied

Satisfied

Neither satisfied nor dissatisfied

Dissatisfied

Very dissatisfied

Prefer not to answer

Section IV. Genetic Testing

Now we are going to ask you about your experiences with genetic testing.

12. FLEARN. How did you hear about genetic testing?

	Yes	No	Don’t know	Prefer not to answer
A friend
A family member
A nurse, doctor, or other healthcare provider
Twitter, Facebook, or Snapchat
Other social media, online advertisements, Google, or other internet sources
Posters, signs, or billboards
Ads or campaigns in the community
Any other place, specify

13. DECISONCONFLICT (DECISIONAL CONFLICT SCALE). We would now like for you to think back about your decision to get genetic testing. Please rate your level of agreement with each of the following:

<Programmer Note: Items placed in matrix. Six items on first screen, five items on second, and four on the third.>.

I knew which options were available to me.

I knew the benefits of genetic testing.

I knew the risks of genetic testing.

I was clear about which benefits mattered most to me.

I was clear about which risks mattered most to me.

I was clear about which was more important to me (the benefits or the risks).

I had enough support from others to make a choice.

I was choosing without pressure from others.

I had enough information to make a choice.

I was clear about the best choice for me.

I felt sure about what to choose.

The decision was easy for me to make.

I feel I made an informed choice.

My decision shows what is important to me.

I am satisfied with my decision.

Strongly agree

Agree

Neither agree nor disagree

Disagree

Strongly disagree

Prefer not to answer

14. DECISION. Who was involved in your decision to get genetic testing? Please check all that apply.

	Yes	No	Don’t know	Prefer not to answer
DECMOTHER Mother
DECFATHER Father
DECSISTER Full Sister(s)
DECHSISTER Half Sister(s)
ECBROTHER Full Brother(s)
DECHBROTHER Half Brother(s)
DECDAUGHTER Daughter(s)
DECSON Son(s)
DECGRANDP Grandparent(s)
DECGRANDC Grandchild(ren)
DECUNCLE Uncle(s)
DECAUNT Aunt(s)
DECCOUSIN Cousin(s)
DECFRIEND Friend(s)
DECSPOUSE Spouse/Partner

<Programmer Note: Always show Spouse/Partner and friend(s). For relatives, only show those that respondent entered as living in RELATIV AND RELATIV2.>

15. DECISION2. How involved were each of these relatives in your decision to get genetic testing?

<Programmer Note: Show list of people selected in DECISION>

Very involved

Somewhat involved

Not very involved

Don’t Know

Prefer not to answer

We previously asked if you ever had genetic testing. Now, we would like to ask you about the type of genetic testing you had.

16. BRCATEST. Have you ever had genetic testing for a BRCA1 or BRCA2 mutation for increased breast and ovarian cancer risk?

Yes

No

Don’t know

Prefer not to answer

<Programmer: If BRCATEST = No, Don’t know or Prefer not to answer, go to LYNCHTEST. Else, go to TESTRESULTBR.>

17. TESTRESULTBR. What was the result of your BRCA test?

I carry a gene mutation that is associated with greater cancer risk for me or my family

I was found to have a gene mutation, but it is not clear whether it is associated with cancer risk for me or my family (also known as a variant of unknown significancer or VUS)

No gene mutation was found

Don’t know

Prefer not to answer

18. BRCARESULT. Were you surprised by the results of your genetic test(s) for the BRCA mutation?

Yes

No

Don’t know

Prefer not to answer

19. LYNCHTEST. Have you ever had genetic testing for Lynch Syndrome or hereditary colorectal cancer?

Yes

No

Don’t know

Prefer not to answer

<Programmer: If LYNCHTEST = No, Don’t know or Prefer not to answer, go to FINFORM. Else, go to TESTRESULTLYNCH.>

20. TESTRESULTLYNCH. What was the result of your genetic test for hereditary colorectal cancer?

I carry a gene mutation that is associated with greater cancer risk for me or my family

I was found to have a gene mutation, but it is not clear whether it is associated with cancer risk for me or my family

No gene mutation was found

Don’t know

Prefer not to answer

21. LYNCHRESULT. Were you surprised by the results of your genetic test(s) for Lynch Syndrome?

Yes

No

Don’t know

Prefer not to answer

Have you ever had genetic testing for any other genetic mutations that may increase your cancer risk?

Yes

No

Don’t Know

[If answered yes to any item on having genetic testing]

Where did you have genetic testing?

Blood test at doctor’s office

Blood test at genetic counselor’s office

Spit in mail kit (like those from 23andme, or Color Genomics)

Other, please specify:

[if had testing through spit in mail kit:]

Which laboratory did you use for your mail in genetic testing?

23andMe

Color Genomics

Counsyl

Invitae

Other, please specify:

22. FINFORM. The following questions refer to [BRCA/Lynch] testing or any other variants related to [breast/colorectal] cancer. How were you FIRST informed of your genetic test results?

[Programmer: If BRCATEST=Yes, autofill BRCA and breast cancer. Else, if BRCATEST=No and LYNCHTEST=Yes, then autofill with Lynch and colorectal cancer. Else if BRCATEST=No and LYNCHTEST=No, then use “…refer to genetic testing for cancer. How were you FIRST informed of your genetic test results?”>

Received an email

Told on the phone

Told in person

Received a letter

Other method, please specify______

Don’t know

Prefer not to answer

23. SATISFAC. How satisfied were you with this form of communication?

Very satisfied

Somewhat satisfied

Neither satisfied nor dissatisfied

Somewhat dissatisfied

Very dissatisfied

Don’t know

Prefer not to answer

24. LaRocque. How comfortable would you be receiving genetic test results from a healthcare provider via each of the following methods of communication?

RECEIVEFAX Fax

RECEIVEVM Personal voicemail

RECEIVEHOM Home voicemail

RECEIVEEM Personal email

RECEIVELET Letter

RECEIVETEXT Text message

RECEIVEWEB Password-protected website

Very comfortable

Somewhat comfortable

Neither comfortable nor uncomfortable

Somewhat uncomfortable

Very uncomfortable

Don’t know

Prefer not to answer

25. IMPROVERESULT. How could the process for receiving your genetic test results have been improved? Please check all that apply.

Receive the results sooner

More compassion from provider sharing the results

More resources provided with the results

Better explanation of the results

Better explanation of what results mean for family members

Other, please specify____________

I do not believe the process could be improved

Prefer not to answer

26. MATERIAL. What materials, if any, were you given to you along with your genetic test results? Please check all that apply.

Genetic report

Personalized medical report

Brochure/pamphlet

Fact sheet/Frequently asked questions (FAQs)

Other, please specify____________

No materials were provided

Don’t know

Prefer not to answer

<PROGRAMMER NOTE: IF NO MATERIALS PROVIDED, SKIP TO PROVIDERRESOURCESFORFAMRISK.>

27. PROVMAT. Who provided you with these materials? Please check all that apply.

Genetic counselor

Gastroenterologist

Surgeon

Primary care provider

OB/GYN

Oncologist

Nurse

Laboratory who performed the test

Other, please specify_____________

Prefer not to answer

28. SHAREMAT. With whom did you share these materials? Please check all that apply.

Family members who have been tested

Family members who have not been tested

Friends

Colleagues

Medical provider

Other, please specify___________

Not applicable, I did not share these materials

Prefer not to answer

Section V. Tools and Resources

The following questions ask about resources and information you may have received regarding genetic testing.

29. PROVIDERRESOURCESFORFAMRISK (ABOUT - Q14). Did your health care provider (genetic counselor, physician, nurse, etc.) provide you resources to help you inform family members about what the results of your genetic test mean for your family? Please check all that apply.

Yes, they provided me a template for a letter to family members

Yes, they discussed ways of speaking with family members about genetic testing

Yes, they provided a brochure or other printed material from the health care provider

Yes, they provided material from the laboratory that did the testing

Yes, they told me about organization(s) that serve people with hereditary cancer

Yes, they provided me a video about genetic testing

Yes, they provided me with another type of information, please specify

No, I was not provided with any resources

Prefer not to answer

<Programmer: If No selected, do not allow selection of other response options and skip to ENOUGHINFO>

30. RESOURCESFORFAMRISK (ABOUT - Q15). Who provided you with resources to help you inform family members about what the results of your genetic test mean for your family? Please check all that apply.

Genetic counselor

OB/GYN

Oncologist

Nurse

Laboratory who performed the test

I was not provided with any resources

Prefer not to answer

31. RESOURCEHELPFUL. Please select how much you agree with the following statement. The resources provided were helpful in my discussions with family members about family cancer history.

Strongly agree

Somewhat agree

Neither agree nor disagree

Somewhat disagree

Not applicable

Prefer not to answer

32. OTHERINFO_O. Thinking back to when you first received your genetic test results. What information or materials do you feel would have been most helpful for discussions about cancer family history?

Don’t know

Prefer not to answer

33. OTHERINFO. What other information or materials would be useful for discussions about cancer family history? Please check all that apply.

<Programmer Note: Create three matrices. Four items per screen>.

More discussion with genetic counselor

Discussions with physician

Information pamphlets or FAQs

Referral to support group

General information about genetic mutations

What genetic test results mean for you and your risk

How genetic test results might impact future cancer screenings

Where and who to go see if you have additional questions

Where and who to go see for emotional or psychological support

Insurance coverage for genetic testing

Understanding choices or options for cancer prevention

How to reduce cancer risk

What genetic testing results mean for your children, siblings, and other family members

None of the above

Prefer not to answer

34. What is your preferred method for receiving genetic testing information? Please check all that apply.

Printed materials (e.g., brochures or pamphlets)

Online

Computer kiosk in a clinic

Speaking directly with medical provider

Genetic counselor

Other, please specify_______

Prefer not to answer

35. (HINTS). Regardless of whether you received information from the following sources, please indicate how much you would trust additional information about genetic risk for cancer from each of the following.

INFOFROMDOCTOR A primary care physician INFOFROMSPEC A healthcare specialist (e.g., OB/GYN,

oncologist)

INFOFROMFAMORFRIENDS Family or friends

INFOFROMNEWSPAPERORMAG Newspapers or magazines

INFOFROMRADIO Radio

INFOFROMINTERNET Internet

INFOFROMTV Television

INFOFROMGOV Government health agencies

INFOFROMCHARITYORG Charitable organizations

INFOFROMRELIGORG Religious organizations and leaders

<Programmer: The following response categories will be included in 3 item grids>

A lot

Some

A little

Not at all

Don’t know

Prefer not to answer

Section VI: Sharing Genetic Test Results

The next series of questions will ask about your experiences sharing your genetic test results with family members.

Please select how much you agree with the following statement.

36. ENOUGHINFO. I had enough information about genetics and cancer to speak with family members.

Strongly agree

Somewhat agree

Neither agree nor disagree

Somewhat disagree

Strongly disagree

Prefer not to answer

37. DESIRETODISCUSSGENTESTRESULTS (Family Communication). For me, talking to my family members about my genetic test result is:

Very easy

Somewhat easy

Neither easy nor difficult

Somewhat difficult

Very difficult

Don’t know

Prefer not to answer

38. (FACTS - Q68). Please indicate if you have shared your most recent genetic test result(s) with any of the following biological or blood relatives.

SHARERESULTSMOTHER Mother

SHARERESULTSFATHER Father

SHARERESULTSSISTER Sister(s)

SHAREDRESULTSHSISTER Half Sister(s)

SHARERESULTSBROTHER Brother(s)

SHAREDRESULTSHBROTHER Half Brother(s)

SHARERESULTSDAUGHTER Daughter(s)

SHARERESULTSSON Son(s)

SHARERESULTSAUNTUNCLE Uncle/Aunt(s)

SHARERESULTSCOUSIN Cousin(s)

SHAREDRESULTSOTH Other, please specify

Yes

I plan to, but not yet

No (I do not plan to share the result)

I haven’t decided

Not applicable

Prefer not to answer

<Programmer: Display as a 5/4 grid. Only display relatives that respondent indicated they have in RELATLIV and RELATLIV2. If SHARERESULTS for all = I plan to, but not yet, No (I do not plan to share the result), or I haven’t decided, go to NOCONTACT, Else go to SHAREDATE>

39. SHAREDATE (NHIS 2015). When did you first share your genetic test result(s) with your <SHARERESULTS>?

Within a week

Within a month

Within a year

Don’t know

Prefer not to answer

<Programmer: Ask SHAREDATE for each item where SHARERESULTS = “Yes”. Autofill relationship for SHARERESULTS.>

<Programmer: If SHARERESULTSMOTHER=Yes OR SHARESULTSPARTNER= Yes, OR SHARERESULTSSISTER= Yes, OR SHARERESULTSDAUGHTER= Yes, OR SHARERESULTSAUNTUNCLE= Yes OR SHARERESULTSCOUNSIN= Yes, then go to FINFORMEDVIATEXT. Else, go to skip logic before MINFORMEDVIATEXT.>

40. (McGivern 2004). When you informed FEMALE relatives of your genetic test result, which of the following methods did you use? Please check all that apply.

FINFORMEDVIATEXT Sent a text

FINFORMEDVIAEMAIL Sent an email

FINFORMEDVIAPHONE Told them on the phone

FINFORMEDVIAPERSON Told them in person

FINFORMEDGRAPEVINE I told someone who then told someone else (through the grapevine)

FINFORMEDVIAOTHER Other method

FINFORMEDNA Not applicable

FINFORMEDDK Don’t know

FINFORMEDPREFER Prefer not to answer

<Programmer: If SHARERESULTSFATHER= Yes OR SHARERESULTSPARTNER= Yes, OR SHARERESULTSBROTHER= Yes, OR SHARERESULTSSON= Yes, OR SHARERESULTSAUNTUNCLE= Yes, OR SHARERESULTSCOUNSIN= Yes, then go to MINFORMEDVIATEXT. Else, go to skip logic before NOCONTACT.>

41. (McGivern 2004). When you informed MALE relatives of your genetic test result, which of the following methods did you use? Please check all that apply.

MINFORMEDVIATEXT Sent a text

MINFORMEDVIAEMAIL Sent an email

MINFORMEDVIAPHONE Told them on the phone

MINFORMEDVIAPERSON Told them in person

MINFORMEDGRAPEVINE I told someone who then told someone else (through the grapevine)

MINFORMEDVIAOTHER Other method

FINFORMEDNA Not applicable

FINFORMEDDK Don’t know

FINFORMEDPREFER Prefer not to answer

<Programmer: If SHARERESULTS for any = No (I do not plan to share the result), go to NOCONTACT>

<Programmer: If SHARERESULTS does not = No (I do not plan to share the result) for any but RELATIVESUNDERGONETESTING=Yes, go to

WHYSHARE>

42. WHYSHARE. Why did you share your genetic test result(s) with these family members? Please check all that apply.

I felt it was my responsibility

It gave my family information that was useful for them

My family asked me about my test results

My genetic counselor and/or doctor(s) advised me to share the results with my family
Other, please specify___________

Don’t know

Prefer not to answer

<Programmer: Autofill those relatives from SHARERESULTS for Q30-32. Ask series of questions for each relative they told.>

43. Based on your experiences with sharing the results of your genetic test(s) with your relatives, how much do you agree or disagree with the following statements?

TIMEEFFORT It took a lot of time and effort to share my genetic information with relatives

FRUSTRATED I felt frustrated while sharing my genetic information with relatives.

QUALITY I was concerned about the quality of the information that I shared.

DIFFUND I was concerned that my relatives may have found the information difficult to understand.

Strongly agree

Somewhat agree

Neither agree nor disagree

Somewhat disagree

Strongly disagree

Prefer not to answer

44. (SunTalk – S3). Now I’d like you to think about those family members you said you didn’t speak with about increased cancer risk. People have many different reasons for speaking with their family members and for not speaking with their family members. Below is a list of some of the reasons people have for not speaking to their family members about cancer risk. Please slide the bar to indicate how much each reason applies to you on a scale of 1 to 5, where 1 is not at all applicable to you, and 5 is very applicable to you.

NOCONTACT You are not in contact with him/her.

NOTIME You didn’t have the time to tell him/her.

NOCLEAR You were unsure how to explain it clearly.

NOTCLOSE The two of you are not close.

NOTCARE He/she wouldn’t care.

NOTUPSET You didn’t want to upset him/her.

NOTATRISK He/she is not at risk for developing cancer.

WHATTOSAY You didn’t know what to say to him/her.

DIFFCOPING You were having difficulty coping with your own risk for cancer.

TOOYOUNG You feel that he/she is too young to understand.

NOTALKOTH Other (please specify)

[Likert scale ranging from 1 (not at all applicable) to 5 (very applicable)]

Not at all applicable

2

3

4

Very applicable

Don’t know

Prefer not to answer

45. RELATIVESCOUNSELING1-4 (FACTS - adapted). Please indicate which of your relative(s) have undergone genetic counseling. If no one in your family has received genetic counseling fill in the N/A response option.

Mother

Father

Sister

Brother

Daughter

Son

Paternal grandmother

Paternal grandfather

Father’s sister

Father’s brother

Maternal grandmother

Maternal grandfather

Mother’s sister

Mother’s brother

N/A I know of no one in my family who has been tested

Don’t know

Prefer not to answer

46. Did you get genetic counseling before or after your <RELATIVESCOUNSELING>.

I got genetic testing BEFORE my < RELATIVESCOUNSELING >.

I got genetic testing AFTER my < RELATIVESCOUNSELING >.

Don’t know

Prefer not to answer

<Programmer Note: Ask question for each relative selected in RELATIVESCOUNSELING>.

47. RELATIVESUNDERGONETESTING1-4 (FACTS - adapted). Please indicate which of your relative(s) have undergone genetic testing. If no one in your family has been tested fill in the N/A response option.

Mother

Father

Sister

Brother

Daughter

Son

Paternal grandmother

Paternal grandfather

Father’s sister

Father’s brother

Maternal grandmother

Maternal grandfather

Mother’s sister

Mother’s brother

N/A I know of no one in my family who has been tested

Don’t know

Prefer not to answer

<Programmer Note: If RELATIVESUNDERGONETESTING1-4 in N/A, Don’t Know, Prefer not to answer, skip to MARITALSTATUS>

48. RELATIVESTESTINGRESULT1-4 (FACTS – adapted). What was the test result for your <RELATIVESUNDERGONETESTING>?

Test was positive for the mutated gene

Test was negative for the mutated gene

Test was not informative/indeterminate/of unclear significance

I don’t know the test result

Prefer not to answer

49. Did you get genetic testing before or after your <RELATIVESUNDERGONETESTING>.

I got genetic testing BEFORE my <RELATIVESUNDERGONETESTING>.

I got genetic testing AFTER my <RELATIVESUNDERGONETESTING>.

Don’t Know

Prefer not to answer

<Programmer Note: Ask question for each relative selected in RELATIVESUNDERGONETESTING>.

50. Who was the first in your family to get genetic testing?

Myself

<RELATIVESUNDERGONETESTING>

<RELATIVESUNDERGONETESTING>

<RELATIVESUNDERGONETESTING>

Don’t Know

Prefer not to answer

<Programmer Note: Autofill all relatives who received genetic testing>.

51. (McGivern 2004). When you were informed of your <RELATIVESUNDERGONETESTING’s> genetic test results, which of the following methods did they use? Please check all that apply.

RINFORMVIATEXT Sent a text

RINFORMVIAEMAIL Sent an email

RINFORMVIAPHONE Told me on the phone

RINFORMVIAPERSON Told me in person

RINFORMGRAPEVINE Told someone else who

then told me (through the grapevine)

RINFORMVIAOTHER Other method

<Programmer Note: Ask question for each relative selected in RELATIVESUNDERGONETESTING>.

52. AFFECTHEALTH (Closeness Scale). How much has your (or your family’s) experience with genetic testing affected how you think about your health?

Not at all

A little

A lot

Prefer not to answer

53. THINKEXP (Closeness Scale). How often do you think about your experience with genetic testing?

Never

Some time

A lot of the time

Prefer not to answer

54. TALKEXP (Closeness Scale). How much time have you spent talking with friends or family members about any concerns you had about your experience with genetic testing?

No time

Some time

A lot of time

Prefer not to answer

Section VII. Demographics

Finally, we have a few demographic questions.

55. MARITALSTATUS (HINTS 4, CYCLE 4 2014 - N5). What is your marital status?

Married

Living as married

Divorced

Widowed

Separated

Single, never been married

Prefer not to answer

56. HEALTHINSUR. Are you covered by any kind of health insurance or some other kind of health care plan?

Yes

No

Don’t know

Prefer not to answer

<Programmer instruction: If No, Don’t Know, or Prefer not to answer skip to EDUCATION. Else, continue to INSURTYPE.>

57. INSURTYPE. What kind of health insurance or health care coverage do you have? Please check all that apply

Exclude private plans that only provide extra cash while hospitalized.

Private health insurance, including those obtained through a state or federal exchange or healthcare.gov, or through the Affordable Care Act, also known as Obamacare

Medicare

Medi-Gap

Medicaid

SCHIP

Military health care (TRICARE/VA/CHAMP-VA)

Indian Health Service

State-sponsored health plan

Other government program

Single service plan (e.g. dental, vision, prescription)

No coverage of any type

Prefer not to answer

58. EDUCATION (HINTS 4, CYCLE 4 2014 - N6). 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

Prefer not to answer

<Programmer Note: If respondent recruited by email, skip to OCCUPATIONALSTATUS. Else continue to HISPLATINOSPAN>.

59. HISPLATINOSPAN (HINTS 4, CYCLE 4 2014 - N10). Are you of Hispanic, Latino/a, or Spanish origin?

Yes

No

Prefer not to answer

<Programmer: If HISPLATINOSPAN = NO, Go to RACE. Else Go to HISPLATINOSPANGROUP >

60. HISPLATINOSPANGROUP (GSS 2012). Which group are you from?

Mexican, Mexican American, Chicano/a

Puerto Rican

Cuban

Dominican

Central or South American

Other Hispanic, Latino, or Spanish origin

Prefer not to answer

61. RACE (HINTS 4, CYCLE 4 2014 - N11). What is your race? You may select multiple categories.

White

Black or African American

Asian

Native Hawaiian or Pacific Islander

American Indian or Alaska Native

Prefer not to answer

62. OCCUPATIONALSTATUS (HINTS 4, CYCLE 4 2014 - N2). What is your current occupational status?

Employed

Unemployed

Homemaker

Student

Retired

Disabled

Other-Specify

Prefer not to answer

<Programmer: If OCCUPATIONALSTATUS = Other-Specify, Go to OTHEROCCUPATION. Else Go to HOUSEHOLDINCOME >

63. OTHEROCCUPATION (GSS 2014 - WRKSPEC). Specify other activity:

64. HOUSEHOLDINCOME (HINTS 4, CYCLE 4 - N18). Thinking about all the members of your family living in your household, what is your combined annual income, meaning the total pre-tax income from all sources earned in the past year?

Less than $20,000

$20,000 to $49,999

$50,000 to $99,999

$100,000 to $199,999

$200,000 or more

Don’t know

Prefer not to answer

65. What region of the United States do you live in?

Northeast

Southeast

Midwest

West

Not in the United States

Don’t know

Prefer not to answer

INCENTX

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Address

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This is the end of the survey.

Thank you very much for your time and effort.

If you would like more information about genetic testing for cancer risk, please visit the following resources:

Bring Your Brave (BRCA testing) https://www.cdc.gov/cancer/breast/young_women/bringyourbrave/

Know: BRCA https://www.knowbrca.org/

Talking to family members http://kintalk.org/

NCI Cancer Genetics Services Directory https://www.cancer.gov/about-cancer/causes-prevention/genetics/directory

If you would like more information about the study, please call 1-312-201-4412 or send an email to [email protected]. If you have questions about your rights as a survey participant, you may call the NORC Institutional Review Board Administrator (toll-free) at 1-866-309-0542.

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