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2011
October
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SURVEY ON HEREDITARY HEMOCHROMATOSIS INFORMATION SOURCE
The following questionnaire aims to define the information sources used to
find general information about Hereditary Hemochromatosis.
The questionnaire is anonymous, and we ask participants to answer honestly
to the questions.
Thank you for taking the time to participate in this study (5 minutes).
A note on privacy: The record kept of your survey responses does not contain any identifying information. There is no way of matching identification tokens with survey responses in this survey.
Sex:
Age:
Nationality:
Scholarship:
Profession:
2.Have you ever done a genetic test for Hereditary Hemochromatosis?
Yes (Go on to question 3)
No (Your collaboration ends here. Thank you very much!)
3.Do you feel sufficiently informed about your genetic testing and its implications to “your health”?
Yes
No
4.Where did you get information about your genetic testing and its implications to “your health”?
(Please select, only, the 4 more important options)
Family doctor
Specialist
Scientist/researcher
Nurse
Internet: official websites (ex: hospital, university)
Internet: other websites (ex: Wikipedia, blogs, facebook, twitter).
Books, Papers or Magazines
Associations of Patients
Family or Friends
Other
5.Where would you like to find (or find more) information about your genetic testing and its implications to “your health”?
(Please select, only, the 4 more important options)
Family doctor
Specialist
Scientist/researcher
Nurse
Internet: official websites (ex: hospital, university)
Internet: other websites (ex: Wikipedia, blogs, facebook, twitter).
Books, Papers or Magazines
Associations of Patients
Family or Friends
Other
6.Of those sources of information, in which do you trust more?
(Please select, only, the 2 more important options)
Family doctor
Specialist
Scientist/researcher
Nurse
Internet: official websites (ex: hospital, university)
Internet: other websites (ex: Wikipedia, blogs, facebook, twitter).
Books, Papers or Magazines
Associations of Patients
Family or Friends
Other
6.1.What makes you feel more confident about some and no other sources of information?
7.Do you feel informed about the implications of your genetic testing to other family members?
Yes (Go on to question 8)
No (Go on to question 9)
8.Where did you get the information you need about the implications of your genetic testing to “your family” health?
(Please select, only, the 4 more important options)
Family doctor
Specialist
Scientist/researcher
Nurse
Internet: official websites (ex: hospital, university)
Internet: other websites (ex: Wikipedia, blogs, facebook, twitter).
Books, Papers or Magazines
Associations of Patients
Family or Friends
Other
Survey on Hereditary Hemochromatosis Information Sources
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