Young previvor support and resource needs

1. Default Section

 
FORCE is collaborating with researchers from Georgetown University and conducting a brief (15 minute) anonymous survey in order to better understand the needs of young previvors with a BRCA mutation or family history of cancer. Participation in this survey is limited to high-risk women age 18 - 25 with a BRCA mutation or family history of cancer who have never been diagnosed with cancer.

By continuing, you are volunteering to participate. If you do not wish to participate, please close your browser or exit at any time.

All responses to this survey will be confidential.
1. How often do you go online to access the Internet?
2. When you go online, where do you primarily access the Internet from?
3. Have you ever....
YesNo
Been diagnosed with breast cancer?
Been diagnosed with ovarian cancer?
Been diagnosed with some other cancer?
4. Have you consulted with a genetics expert or received genetic counseling about BRCA testing?
5. Have you undergone or are you planning on undergoing genetic testing for a BRCA mutation?
6. What were your test results?
7. Are you married, involved in a relationship or single?
8. How many children do you have (please include biological, adoptive, and step-children in this total, as well as any other children you may raising as a full-time parent)?

9. Have you ever....
YesNo, and not considering it within the next 5 yearsNo, but considering it it within the next 5 yearsI'm not sure
Taken a medication to lower your risk for cancer
Had a mammogram
Had a breast MRI
Had surgery to remove your breast(s)?
Had surgery to reconstruct your breast(s)?
Had surgery to remove your ovaries?
10. Please think about the need for resources, support, and information for young women with a BRCA mutation or family history of cancer.
YesNoI don't know
Is there a need for more resources/support?
Do you want more resources/support?
Would you use more resources/support?
11. Regarding resources and support, please indicate if any or all of the following topics would be helpful for young, high-risk women with a BRCA mutation or family history of cancer who have never been diagnosed with cancer.
YesNoI don't know
Making decisions regarding genetic counseling
Making decisions regarding genetic testing
Making decisions regarding risk-management options
Issues associated with dating
Issues associated with fertility and family planning
Communicating with my spouse/partner
Communicating with adult relatives
Communicating with children
Intimacy and sexuality issues
Communicating with friends
Issues associated with career planning and work-related issues
Issues associated with financial planning
12. On a scale from 1 to 7, where 1 = “Not at all likely” and 7 = “Very likely”, how likely would you be to find the following resources and support information for spouses and partners to be useful to you? (check all that apply)
1 (Not at all likely)234567 (Very likely)
Informational materials delivered by regular mail
Toll-free telephone help line staffed by other young women
Informational materials delivered by e-mail
Interactive meeting or support group at a local FORCE outreach group meeting
Interactive meeting or support group at FORCE national annual conference
Printed booklet or guide
Periodic newsletter
Expert teleconference or webinar
Informational video or DVD
Website with message boards (visitor posts and comments)
Website with instant messaging chat
Speaking with other young women going through similar situation (peer support)
Speaking with another young woman who has been through this situation plus specialized training (peer counselor)
13. Do you wish to speak or meet with other young women who are high risk for cancer?
14. What is your age as of July 1, 2011?
15. Which of the following would you say is your race? (Choose all that apply)
16. Where do you live?
17. If you currently reside in the United States, what is the 5 digit ZIP code of your primary residence?
18. What is the highest grade or year of school you completed?
19. Is there any other feedback that you would like to share with us?
Optional: If you would like to receive updates and information about FORCE programs, please join our mailing list by clicking on this link or entering your contact information on the mailing list page at the end of this survey. If you do not wish to join our mailing list, click "Done" to finish and close the mailing list page after exiting the survey.
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