Australian MS Longitudinal Study
Frequently Asked Questions
This concern generally relates to those questions that ask how you feel today, or the last week, or 4 weeks. For many, how you feel or your symptoms aren’t consistent and it may well depend on which day you are answering the survey as to which answer you select. Reasons for the change may be that your symptoms change depending on whether it’s summer or winter, or whether you’re having a good or bad day physically or emotionally, or in fact, there may be something else entirely non-MS related that is affecting your answers, such as another medical condition or other life event.
Short of asking you to answer the same questions every day, or indeed, every hour, to track your progress over a full year, we are always going to come up against the issue that the day you answer a survey may not be a good reflection of ‘normal’. This is one issue we are discussing and trying to decide what we can ask of you that will be both representative, and not too much of a burden. For now, while there are certainly issues, we are aware of them and in general, the survey results do give an accurate overall picture.
The “General Information” section is the first section in each of our surveys where we ask for your AMSLS ID, today’s date, your date of birth, your gender and your town of birth.
We know that this section is frustrating for many of you as you are aware we already have this information. We do apologise for that, however, we need this information in order to make sure your answers are actually you.
For each survey we administer, there are generally between 50-100 responses where people have mistyped or miswritten their AMSLS ID. In the case of the hand-written paper surveys, there is also the chance the ID has been read into the system incorrectly. In each case we need to manually match up existing information to ensure the ID is corrected and the information is recorded against the right person and unfortunately, we need your date of birth, gender and town of birth to make sure we get it right. You would be surprised how many people share a date of birth (including the year!)
We are working on ways to ‘pre-fill’ data for everyone, not only for identification purposes, but for general questions where we DO already have your information, but there are many ethical, security and administrative issues to work through before we can do that. In the meantime, please feel free to curse us under your breath, but know why we have to do it this way for now.
Even if a survey doesn’t sound relevant from the title, please take the time to complete it as the information you provide is crucial to the overall picture of people with MS.
For example, you may not be employed, but the Employment surveys have questions about retirement, whether you are seeking work if you are unemployed, and the hours of unpaid and voluntary work you may do. Without the input of those not currently in the work place, we would be missing a large amount of information.
Similarly, the Medications and Disease Course survey has commonly been interpreted as only being applicable to people who are currently on medications. Aside from the fact that most of the survey is NOT about medications, how can we see how people are going who are NOT on any medications if we never get a response from them?