Research: Will CCSVIers modify their views in face of negative information?

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Well we have been talking about abstracts at the AAN this week, here's another contentious one to wet the appetite, before the weekend onslaught.

Warning this has not been properly Peer-Reviewed 

its only an abstract not a paper

[P05.128] A Randomized, Controlled Trial of an Educational Intervention for MS Patients Concerning CCSVI Dalia Rotstein, Michael F. Evans, Marika Hohol, Paul O'Connor

OBJECTIVE: To assess opinions concerning CCSVI in a Canadian cohort of MS patients and to determine whether a physician-designed educational tool would change patient opinions.  

BACKGROUND: Chronic Cerebrospinal Venous Insufficiency (CCSVI) is the theory that extracranial venous occlusions may give rise to multiple sclerosis (MS). A treatment involving venous angioplasty has been developed based on this theory. Access to this treatment, which remains controversial, has been widely demanded by MS patients in Canada.  

DESIGN/METHODS: A literature search was conducted in September 2010. The results were incorporated into a narrated slideshow video describing CCSVI and research performed to date. 74 patients were randomized to watch either the physician-designed video or a recent Canadian television documentary video on the topic. All subjects were required to fill out the same questionnaire concerning their opinions about CCSVI before and after observing the videos. The primary outcome was defined as desire for CCSVI surgery. 

RESULTS: Overall 74 patients participated, mean age 44, median EDSS 3.5, with 36 randomized to the physician-designed video group and 38 to the documentary video group. Seventy per cent desired CCSVI surgery before watching the videos compared to 65% after. There was no significant difference between the groups, either before or after viewing the video (p=1.0 for “before” and “after”). Higher EDSS scores were associated with desire for surgery (r=0.6, p<0.05).  

CONCLUSIONS: A significant majority of MS patients in Canada desire CCSVI surgery. A review of the scientific evidence did not dissuade patients from their desire for surgery, despite the fact that good evidence for its efficacy does not exist. Desire for CCSVI surgery is correlated with greater disability, presumably because of the lack of effective conventional agents for more advanced disease.

I think the take home message suggests that people who are convinced of the validity of benefit of CCSVI are unwavering in their passion for the treatment, even when there is no good evidence to support the view. Based on comments we get, I think that we do not need data to believe that this is the case. These are sometimes balanced and thought-provoking sometimes threatening (I wish you would stop this please!....it does your case no good) and sometimes just plain IG11.

Science is about modifying your views as knowledge grows. Depending on the outcomes of the trials I am sure there will be more clarity. If it does not work...shame and I am fine with this and if it works great and I am fine with this also (Either way at present the outcome would not influence my research). 

I wonder if there is benefit from venoplasty, does this mean that CCSVI is the dogs bo***cks or whether there could be an alternative explanation………..I think maybe. Let’s see.

Over the weekend we will post the monthly round up of CCSVI so you can see if the recent research is suggesting that there is real (mystery) meat to the story or not. 

 

  
As promised(John & Andy in Manchester) the Happy or Sad Zamboni are no more :-).