8. Survey question considerations

8. Survey Question Considerations

To frame questions for these surveys these considerations were made.

clear English and non technical terms

            Some respondents may not have English as their first language

            and most will likely not have medical background. The words

            used were chosen on purpose to be down to earth and based

            on experience of the day to day.


            People have limited time to fill out surveys. An attempt was

            made to ask question the shortest way possible.

            To respect people’s time, questions were often asked in

            checklist form or multiple choice so that many aspects

            of a question could be gone through at the same time.


            Questions were made optional within a survey, just as surveys were themselves

            optional.  This was done so that if a person wanted to not

            divulge an answer or did not find a question relevant they

            did not then have to stop the survey but could just skip

            that question.  Some surveys require an answer to every question.          

            This was one designed to be optional..


            This is one of the most comprehensive surveys every done

            of dystonia. It asks the very detailed questions people

            mention in books, anecdotally or on social media that

            clinical studies either may not have thought to ask

            or did not have time to ask.  There were i

            over 2000 questions in these surveys. That number enables

            a very wide study of the nature of this very poorly understood

            condition.  The questions may seem small specific about

            time of day when pain is worse, or whether a bra strap

            hurts but these features may matter.

no labels of types of dystonia

            The names for types of dystonia have varied widely over

            the years. People with a diagnosis 15 years ago may

            nowadays be under a different category. In addition there

            are often two ore more labels for the same dystonia. A dystonia may be

            both focal and cervical for instance, given categories and

            sub categories. To be the easy to understand, questions

            focused on the body part involved instead.

no stigma

            A real effort was made to avoid words that have stigma. The surveys

            do not ask  ‘Are you depressed?” which is a medical label some may not

            like. To determine mood, questions were more specific asking about trouble             sleeping, interest in eating.etc.

no bias in the question

            It is easy to inadvertently hint at answers in questions

            if the questioner expects a certain answer.  Great effort was made

            to avoid such bias.  For instance instead of asking

            “Is your pain worse at night or in the daytime?” which

            assumes there is pain, the question was framed to ask

            if there is pain, and only later when that pain occurs.

 clarity of question

            Many studies seek a numerical answer for statistical analysis.           

            People are asked if they have trouble sleeping some or most

            or all of the time for instance. From the respondent perspective

            though, the differences between ‘some’ and ‘most ‘ may be

            unclear. The survey tries to use scales only when the options are

            clear though that is sometimes a challenge.

            An effort was made to avoid confusion. Sometimes in surveys, the question

            asked is so precise that it has become contorted. For instance

            if a person asks if the respondent agrees or disagrees with

            the statement “I do not feel much energy each day”  there

            may be confusion. The respondent is trying to figure out

            if he disagrees that he does not, so that would mean he does.

            An attempt was made to ask questions clearly though this

            is sometimes easiest to know if a focus group does the

            questions and gives feedback.

            An effort was made to get feedback on the right topic and

            to frame questions that could not mislead. To ask if dystonia

            has made a person have to eat only soft food, if the question

            asked “Do you eat applesauce or yogurt daily?” the person

            who responds yes may only do so because they have always

            eaten applesauce daily because they like them not due to


number of questions

            The Survey Monkey platform can handle 5000 questions.

            This series did eventuallyget responses to several thousand questions

            often in checklist format.  To keep the task of responding less daunting,

            a short short survey of 25 questions was created for those who only wanted a             quick             way to describe their experience. 

adjustments as project progressed

errors of design

            It was noticed once the questions were online and a few

            people were doing them, that there were some typographical

            errors and a few other missteps such as listing something

            as multiple choice (one answer possible only) when it should

            have been checklist (as many answers as one wants).

            When errors were noticed they were corrected except when

            there had already been people answering the question in such

            numbers that data of their responses would be lost if the

            question was rewritten. In that case, the question was left as

            it was, in order to keep the survey results accurate. However

            ideally such errors would have been caught sooner in

            the design stage.

new input half way through the project

            Over the course of a year, research about dystonia

            continues and social media and patients continued

            having insights.  Six months into the study it became clear

            that a few other very good questions could have been asked. At

            the half way point therefore, a second series of questions was put

            up, called “one more go”. These questions attempted

            a follow up to the first set, and provided the study with the luxury

            of being its own follow up. However this set was not as well

            subscribed to, was not as well advertised and it is likely that

            most respondents were tired of the process and felt they

            had done enough.  It is not clear if the “one more go’ series

            then is going to be as useful, though some of those surveys

            did reach fairly high respondent numbers. A few did not.

            What seemed useful in the end was to have the second set question

            on paper so that researchers considered it as a question

            useful to ask, were they to design a follow up survey.