I am ill and sick too! The 200 smack-a-ronies have my name on them! I'm sure of it!

Hello, this is Mathew Curtis one of the researchers working on this study.

First, thank you all for your interest in the study and the questions you have posted. I am going to try and respond to all of the questions posted.

As Chemar suggests we are interested in how people respond at the specific time the study is taken. In this respect MS is an interesting medical condition to study because as most of you recognize your symptoms vary on a short term (hourly) as well as long term (yearly) basis.

One of the initial questions in the study asks the length of time the respondent has had the disease. This allows us to examine how long someone has had MS affects responses. As Cindy mentions we expect people who were diagnosed with MS last week/month to differ from those who have had MS years/decades. However, it is 1) important to check these differences exist rather than just assuming they do – as an outside without MS this would be rather presumptuous of me to do and 2) determine the extent and nature of these differences. At what point after MS onset do people have minimal responses to the survey such as “Nada”, to borrow from Cindy again, and when do they have more intense reactions to the survey. Do people differ more in emotional responses or more in behavioral responses? This is one of the questions the survey addresses.

The strongly disagree/agree response options are typical to psychology and allow for more complex statistical analyses than response options such as sometimes/rarely. While this is not a very informative response as to why we use the response options we did - the hopefully mild constraints this put on your responses allows us to compare and contrast the responses of different MS patients more effectively.

With respect to the focus of the study. The questions within the survey are primarily drawn from existing psychological scales. Also, within psychological research we often have to ask the same thing a number of ways to check that we as the researcher are asking about the same thing as you the respondent are thinking about. This is why there may seem to be some repetition of questions. The English language is often very subjective and so to check we understand someone’s responses we sometimes ask similar questions to make sure we know what you mean. Within the survey we assess a wide range of emotions, behaviors and thoughts we think MS patients may experience. Ideally, we would have liked to have asked many more questions. The survey currently takes most people about 20 minutes to complete. In practice trials we found that longer surveys meant people got bored or frustrated and did not complete the study.

Eventually, we will expand our focus to examine other medical conditions beyond MS. At present though our focus are MS patients. The link to this study has currently only been posted on MS boards/websites. Also, at the end of the study we ask people to indicate their current illness if they feel comfortable doing so. To date over 95% of people have reported they have MS, those people who report other medical conditions we store in a separate database. In the future we intend to compare the responses of people with MS to other medical conditions. For example, earlier I discussed how for many people MS symptoms fluctuate. How would responses to our questions differ in symptoms did not fluctuate or were more/less severe than MS? This is what we hope to examine in the future by having people with conditions other than MS complete the study.

There are four $200 prizes. For every 500 participants who take part in the study we randomly select one winner. So the odds are 1/500 of winning. To date we have had 300 people take part in the study. When we reach the 2000 participant target the study will be closed or we will apply for more funding to ensure that everyone who takes part in the study has the same odds of winning the lottery prize. The university checks up on us to make sure we do this.

I will try and check back on the board in the next few days to see if there are other questions posted. If you want to discuss anything in the study with me directly, or want further clarification on anything I’ve written here, please contact me at mcurtis @ usc.edu (as a new member I cannot post an email address to please remove the space before and after @ to reach me)
Finally, FYI I intend to return later in the summer once our data collection is complete to share those results that I think may be most interesting to the board.
Thank you again for your interest in the study,
Mathew Curtis
University of Southern California

Thank you for the explanations, Mathew. I hope the survey, as designed, draws out the info you are seeking.

I can assure you that my answers can be 180 degrees either way, depending on my circumstances at the time that I take the survey. If I had taken that survey 2 or 3 months ago, I would have had to "strongly agree" with 90% of the negative points (even though I've been through worse with this disease over the past 17 yrs, and know things can get better again). When a person is in pain constantly, not improving over a long period, and discouraged, I suspect many would respond quite differently then when they are feeling more well for a long period.

Today I am again hopeful for the future . . . although I still had my recent bad experiences at the forefront when I answered.

I'll be very interested in seeing the conclusions, when they are complete, as well as looking forward to spending my $200.

Cherie

Your $200 Cherie?

I think you have that wrong. Very wrong.

And wouldn't you know it . . . for the first time in 100 yrs or so, our $$ are close to par with the US.

(You can have one of the other $200 awards . . . there's enough for a few of us )

Cherie

Thanks for the explanation Mathew. Like Cherie said, if I had been in a flare like I was a month or so ago, my answers may have been different. They probably would have been more negative than positive.

I wish you the best of luck on your research. I look forward to the e-mail from you regarding the $200. LOL

Matthew,

If I win the $200, you can just send it to Max Kade House on Hoover Street for extra security bars. I am sure that you have seen it and the poor USC students that have to live there.

My sister endured the place for two years and made it out alive.

I hope that your research proves to be valuable.

-Vic

(If I win, just sent me a picture of Traveller!)

Attached Thumbnails

 

Here ya' go, now leave my money alone!

I thought it was kind of fun although I'm not sure my answers seem very congruent. It hardly sounds possible to be as cynical and bitter as I am but still keep pushing forward despite my lack of hope?