Tell us about your Quality of Life
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The purpose of the survey is to collect Quality of Life information from cancer survivors in Native American, Alaska Native, and Native Hawaiian communities. The goal is to find out if cancer education programs such as Native American Cancer Education for Survivors (NACES) improves the quality of life of Native survivors. The information is being collected as part of a study sponsored by the National Cancer Institute and the Susan G. Komen Foundation. This information will be used to better help Native survivors and others in the future.
Will the information I provide be kept private?
Yes, the information you provide will be anonymous, which means your name will not be associated with the information you provide. You will be asked to create a code-name. This is a name made up of a color, symbol, and number (e.g. Red-Fox-12) that we will use to keep track of your survey answers. The study staff will not have access to any information that identifies you.
Who is the Privacy Broker and why am I being asked for my contact information?
The Privacy Broker is a real person named Alice Bradley who is not part of the study research staff and does not have access to any of the Quality of Life information you provide. The Privacy Broker will only have access to any contact information (e.g. name, address, etc.) that you choose to provide. The study research staff will never have access to your contact information. The Privacy Broker can help you if you have any problems with the surveys and can contact you if any of your survey answers indicate you have a problem that needs medical attention. For more information on the Privacy Broker and her role in protecting your privacy, click here.
How long is the survey?
The survey is broken up into four pages with about 30 questions on each page. The time it takes people to do a page of the survey varies greatly. Some have reported it takes about 10 minutes per page, while some individuals have needed more time. You do not have to complete all four pages at once. You can do as many questions as you want and then click the button at the bottom of the save your answers. The survey is designed to be as easy as possible to fill out with check boxes and pull-down menus.
There are five categories of questions:
- Information about you (such as, what region of the country you are from)
- Your personal experience with breast cancer (such as, when you were diagnosed with breast cancer)
- Your current cancer condition (such as, cancer-free)
- Your quality of life - physical and spiritual (such as, being able to do the things you want to do).
- Your quality of life - mental-emotional and social (such as, being able to do the things you want to do).