7. Survey Considerations- Disclaimer, Pros and Cons
It was decided to make this online survey, anonymous and volunteer, asking about symptoms, progression of symptoms, effect on daily life, mood, pain, interactions with the medical community, types of treatments and the effects and side effects, moods and coping mechanisms, sensory tricks, and patient theories about possible causes .
The series would run May 2020 to May 2021
It was decided to break the many questions up into groups for convenience of respondents and to give them options of categories they felt useful.
There was a general survey for everyone and then 27 separate optional questionnaires in the first six months and 14 additional surveys in the second, totalling several thousand optional questions,
A. considerations
no medical advice -The website and the surveys would be for patients
and from patient perspective. This would not be a site to give medical advice.
no invasion of privacy even in the question style
The surveys were anonymous, set at the highest
possible settings for this on Survey Monkey, a respected
international survey platform used by researchers.
The identity of who does the survey is now known, not
their name, age, gender, race, place of origin and none
of their medical or personal history. The only fact Survey
Monkey knew was the IP address, which was used to
access the online platform. IP addresses do not stay constant
and the identity of the person using that IP address was not known.
The survey platform, Survey Monkey destroyed
all IP addresses when the surveys were complete.
In addition, the questions were not personally identifying.
There were questions about a person’s past medical experience,
injury or infections but they were kept general and voluntary.
There were questions in one survey about the ‘identifiers’ of who is doing the survey. These questions were all optional. The goal
was to see if theories about higher incidence among
some populations or geographic locations (Ashkenazi Jewish, Filipino, Nordic)
were supported. Questions asking about race and location were kept very general and did not identify respondents individually. There was low uptake for that survey.
no commercial endorsements or suggestions
In all questions, brand names of products or services
were avoided. When respondents were asked about what
medicines they have been prescribed or what products
they have used, no product names were given. This was to
ensure that the discussion was about a type of product not
an endorsement of any. This approach was particularly challenging
for questions about botulinum toxin, which has at least
four brands but whose name is often in the public often
given as a common brand name. The goal was to ensure
that no company would benefit from or suffer harm over
results of the question.
no naming of people with dystonia or of researchers in the questions
The history section of the website names
researchers who have studied the condition and
published results. There is also a website section which
names patients who have gone public with an online
video, published book, media interview or publicly visible
foundation but they had already gone public. Great effort was made to ensure that
only those who had already gone public were mentionned
on the website. The questions themselves do not name
people or in any way violate privacy.
ease of answering
Instead of having one survey of 1000 questions, the focus group
recommended that there be several smaller surveys .
The surveys vary in length and average time to complete
one was 9 minutes. However some surveys were written
before the advantage of a checklist question style question was
realized so one or two are longer.
It was understood that most respondents have challenges to
responding, either with sitting down, holding neck upright,
using fingers, or even with vision. The surveys were made
flexible in that a person could pause and save and go back to
complete more of it later.
The surveys were online for one year. This window was
long to permit time to spread the word to people who have
dystonia that they could do the survey. It also permitted
people time to fill it out at their convenience. A one year window may not be necessary however were it known better how to find people with dystonia
to tell of the survey.
B. Disclaimer
This questionnaire is not intended to provide instruction. It is not a diagnostic survey. It is intended for those who already have been told by a medical doctor that they have dystonia
Readers and users should not rely on this information to determine diagnosis, prognosis or a course of treatment. It should not be used in place of a professional consultation with a doctor.
The writers of the questionnaire are not responsible for the consequences of any decisions resulting from the use of this information, including, but not limited to, choosing to seek or not to seek professional medical care, or from choosing or not choosing specific treatment based on the information. You should not disregard the advice of your physician or other qualified health care provider because of any information you receive from this survey.. If you have any health care questions, please consult your medical practitioner.
The questions for this questionnaire have been created based on situations described by patients or researchers over a wide range of types of dystonia. No person has all types of dystonia so some questions will not apply to any given patient.
The questions are not intended to capture the future, only to ask about the present and the past. The questions may ask about symptoms that are not likely dystonia in order to look at situations that tend to make the condition harder to understand.
The questionnaire has no commercial interest, recommends no purchase, product or service and makes no endorsements. Reference to any products or services, Internet links, third parties or other information by tradename, trademark, suppliers or otherwise does not constitute or imply its endorsement, sponsorship, or recommendation
Those completing the survey assume all responsibility and risk for use of the questions. There is no cost to filling out the questionnaire and no reimbursement for having done so.
The identity of those filling out the survey is not sought except in general terms of categories and those questions are optional. Responses will be compiled in aggregate and not be stored in connection with any names. Names will not be collected for this survey..
C. Survey platform – Survey Monkey
This is a widely used professional survey platform that is available internationally. It is often used by clinical researchers. It provides statistical analysis of data and enables the highest possible privacy settings of anonymity .
Lived Experience With Dystonia 