Part 1: Pre-Assessment Survey
1.
In an effort to better serve the needs of people with cancer and their loved ones, we are asking you to complete several questions that will be used to evaluate and improve this educational program on clinical trials. The information you provide may be written into a published report, though we will not reveal your identity or personal information. Please confirm that you understand this statement of consent and still would like to voice your opinion:
Yes
No
2.
Please enter a name or 'id' that is unique to you. You will be asked to enter this same name when completing the Post-Assessment Survey as well. We STRONGLY recommend that you use your email address. Please note that NO email will be sent to you and your email address will not be shared with anyone else. *THIS IS A REQUIRED FIELD.
3.
Please tell us who you are:
Person with Cancer
Spouse / Partner
Friend
Relative
Healthcare Professional
Other
4.
Your age:
5.
Your gender:
Male
Female
6.
Your highest level of education:
Less than high school
High school
Some college
College graduate
Post graduate
7.
Your ethnicity:
Hispanic or Latino/Latina
Not-Hispanic
8.
Would you descibe yourself as:
White
Black or African American
Asian
American Indian or Alaskan
Native Pacific Islander
Other
9.
If you or a loved one has cancer, what is the type of cancer?
10.
How long since diagnosis?
less than 3 months
3-6 months
7-12 months
13-24 months
2-5 years
more than 5 years
not diagnosed with cancer
11.
Are you or your loved one currently receiving treatment for cancer?
Yes
No
12.
Who has talked with you or your loved one about clinical trials? (Select all that apply. Window users must hold down control or shift while selecting multiple answers.)
no one
a doctor
a nurse
a social worker
a family member or friend
another cancer patient
I thought of it on my own
other
13.
Which response most closely represents your experience or your loved one's experience with clinical trials? (select one):
currently enrolled or have been enrolled in the past
tried to enroll, but was not eligible
did not know this was an option
do not want to be involved with a trial
am interested, but have no experience
none of the above
14.
Have you received information about clinical trials in the past?
Yes
No
15.
If yes to the last question, please check all that apply. (Window users must hold down control or shift while selecting multiple answers.)
from my doctor
from a nurse
from the Internet
in the mail
at a workshop or educational forum
from a friend
from a patient advocacy group
other (please explain in box below)
16.
If you received information about clinical trials at a workshop or educational forum, please list where:
17.
How do you prefer to receive information on this topic? (Select all that apply. Window users must hold down control or shift while selecting multiple answers.)
from my doctor
from a nurse
from the Internet
in the mail
at a workshop or educational forum
from a friend
from a patient advocacy group
other (please explain in the box below)
18.
If you or your loved one would not like to participate in a clinical trial, why not? (Select all that apply. Window users must hold down control or shift while selecting multiple answers.)
fear of medical risks
suspicion of medical research
fear of death
preference not to work with another physician
not sick enough
my doctor has not discussed this option with me
it seems too difficult or costly
other (please explain in box below )
This question does not apply to me (please explain)
19.
Do you know how to find a trial that might be appropriate for you or your loved one's cancer?
Yes
No
Not sure
20.
If yes, where?
21.
At this time, do you feel anxious about participating in a clinical trial?
Yes
No
Not sure
Please rate your answer to the following questions on a scale of 1-5, with 1 being the lowest score and 5 being the highest score.
22.
How would you rate your current knowledge of clinical trials?
1
2
3
4
5
23.
How would you rate your (or your loved one's) willingness to participate in a clinical trial?
1
2
3
4
5
Please respond True or False to each of the following statements:
24.
Placebos (sugar pills) are almost never used in cancer treatment trials but may be used in cancer prevention trials:
True
False
25.
Clinical trials are usually the "last resort" for patients who have no other treatment choices.
True
False
26.
In randomized trials, participants are assigned to either a control group or the study group by an objective panel of scientists.
True
False
27.
Usually, the longest part of the drug development process is finding people to participate in the clinical trial.
True
False
28.
If new benefits, risks, or side effects are discovered during a trial, the researcher is not obligated to tell study participants.
True
False
29.
A clinical trial cannot be stopped before the study has been completed because of the high cost of conducting research.
True
False
30.
Most cancer patients know about clinical trials but prefer not to participate.
True
False
31.
One reason why people do not participate in clinical trials is a general fear or distrust of research.
True
False
32.
Doctors discuss clinical trials as a treatment option to racially and ethnically diverse populations because they are more likely to be medically underserved.
True
False
33.
In most clinical trials, patients receive free care.
True
False
34.
Extra tests may be required in a clinical trial that a patient's health plan may not cover.
True
False
35.
The physician who makes the cancer diagnosis always informs the patient of available clinical trials.
True
False
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