7. Survey considerations and disclaimer

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 .