A research team at the National Institutes of Health and the Johns Hopkins University Bloomberg School of Public Health is seeking prostate cancer patients willing to complete an on-line survey as part of a study to determine how men with prostate cancer cope with their disease, how their quality of life (QoL) is affected, and how they think about themselves compared to others. The study has been designed to gain insights into the relationship between coping and quality of life.
Participants will only need to take an anonymous on-line survey. The survey questions ask about how you perceive your health and other aspects of your life, your thoughts and emotions since your diagnosis, and how you have dealt with the disease. All parts of the survey are completely voluntary.
Complete and detailed information about the study (“The Role of Social Comparisons in Coping and Quality of Life following a Prostate Cancer Diagnosis”) can be obtained by clicking though to the survey web site, which begins with an overview of the study.
NOTE: In order to actually do the survey you have to request a username and a password from the study coordinator. Please click on the “Contact Us” link or the “How it Works” link at the upper left of the survey web site to see how to get a personal username and password.
The research team is interested in hearing from:
- Men who are newly diagnosed and may still be learning to deal with their diagnosis and related symptoms (if any)
- Men who are not very bothered by their diagnosis or symptoms (if any)
- Men on active surveillance or some other form of expectant management
- Men who have received any type of treatment for their localized disease
You can take part in this study if you can answer YES to the following three statements:
- I have been diagnosed with localized (non-metastatic) prostate cancer (of stage T1b, T1c, T2a, T2b, or T2c).
- I was between 18 and 70 years of age when I was diagnosed with prostate cancer.
- Either I have never been diagnosed with any other type of cancer, or I have never been diagnosed with any other cancer except for skin cancer that was not melanoma.
The survey will apparently take about 45 minutes to complete, so there is a significant time commitment.
If you begin the survey, you can choose to skip any question that you do not want to answer. You can also stop taking the survey at any time. However, if you finish the survey and then change your mind, the research team will not be able to delete your responses because the surveys are all anonymous.
No one else needs to know that you have participated in this study. The research team will not ask for your name or contact information on this survey. If you provide the research team with your name by calling or writing to them, they will not link or associate your name with your responses, and data collected as for this study will not be part of any medical record. Reports of research results related to this study will not contain any identifiable information from any study participant.
Filed under: Living with Prostate Cancer Tagged: | coping, quality of life, research, survey
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The link goes to a site that requires a user name and password and no way to register. Can you get a link to a site where the survey can be taken?
John:
Please see the added note in bold italic type in the text above. It tells you how to get to information you need to get a username and a password.
Mike