Questionnaire for people with a brain tumour
Filling in this questionnaire will take about 1 hour of your time, if you have an immediate answer to all questions.
Information received from people with a brain tumour will be used to help other people with a brain tumour survive or live longer. It will not be a statistic study, unless we get sufficient response. The more responses I will receive, the more valuable the study becomes. What I am looking for are similarities between people who live longer than average.

My name is Nathalie. I am 38 years old, live in The Netherlands (about 20 kilometres from Amsterdam), have two sons and am recently married. In January 2008, when my youngest son was eight weeks old and my oldest son was 19 months old, I was diagnosed with a brain tumour, a Glioblastoma Multiforme, in the right brain lobe. I am not nearly finished with this life and therefore I am thoroughly searching for similarities between those people with a brain tumour who have survived longer than average.  

 

Because I do not know exactly where to look, I want to set up a wide-ranging study, so everybody with a brain tumour is kindly requested to fill in this questionnaire. Maybe I will find nothing, maybe a straw to grasp. Maybe I will find it in time, maybe too late. But maybe we will find SOMETHING, albeit very small, that can help me and others to survive.

In current studies I miss the difference in behaviour, living conditions, and possibly alternative treatments. For me it is too specifically aimed at operations, radio therapy, and chemotherapy, and I am curious about the effects of a combination of treatments and lifestyle.

 

Therefore I would very much appreciate it if you would take the trouble to fill in this questionnaire.
I will try to publish the results on the Internet in due course. The questions often are divided in the period before or during the diagnosis and the period after the diagnosis. (Diagnosis means the moment you learned you had a brain tumour.)



There are 176 questions in this survey.
A Note On Privacy
This survey is anonymous.
The record kept of your survey responses does not contain any identifying information about you unless a specific question in the survey has asked for this. If you have responded to a survey that used an identifying token to allow you to access the survey, you can rest assured that the identifying token is not kept with your responses. It is managed in a separate database, and will only be updated to indicate that you have (or haven't) completed this survey. There is no way of matching identification tokens with survey responses in this survey.

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