Saturday, 6 October 2012

Update 17 - Survey Results Part 4

Again thanks to all those who filled in the survey I have over 410 responses now.  for those who haven't it is:

GBS-CIDP Survey.

The results below are about what was recommended and a start of the different effectiveness of treatments:

What these show is that IVIG is the most recommended treatment, Steroids are recommended to far more to people with CIDP and Immuno-Suppresants far more to people with GBS.  What I find interesting is the number of people who were recommended no treatments, as surely something should be recommended (or is that because like me after my initial attack treatments were discussed, but none recommended, so I didn't have any, but after my relapse either IVIG or Steroids were)?

The average treatments per person is also good indicator, it says to me with GBS at just over 1 once it was diagnosed the treatment recommended was deemed correct (whether it was or not is another discussion).  For CIDP at 2, the doctors were much more uncertain about what to recommend.

Below I look at the treatments generally and what impact they had on the condition:

This graph is of all treatments recommended and their effectiveness.  As you can see the majority were given IVIG and of those most saw a major improvement (I have the individual charts lower down).

The chart relates specifically to the level of improvement seen in having one of the recommended treatments. The was based on a sample of 350 people, as you can see some people must have had more than one treatment.  If I have the capability I may try and graph the number who have had more than one which was the more effective, though I don't think I have enough to sample from yet.

 The next five show the relative effectiveness of each specific treatment:

This clearly shows that IVIG as an overall treatment has been effective for the majority of people and as it was the major treatment recommended I suppose this is justified.Total treated 269 - 49% of sample.

What this shows is a complete uncertainty of whether they are good or not, just about all four quadrants are even, so are steroids worth it (especially given the side effects)? Total treated 121 - 22% of sample

Plasma also appears to have significant benefit as a treatment, though not quite as high as for IVIG.  Total treated 75 - 13% of sample.

Immuno-Suppresants, like Steroids, seems to be totally variable in effect.  In fact they appear worse than Steroids for no effect whatsoever. Total treated 59 - 11% of sample.

Other treatments make up the rest (30 people & just 5% of the sample) so the actual results can be swayed by just a few answers.  However some of these other treatments may be beneficial (they range from Pain Killers, to Cancer fighting drugs).

Please remember these are results from a survey aimed to assist people to make a better informed decision, rather than facts about what is advised for the individual.

Next time (in 2 weeks) I will be examining the treatments relating specifically GBS/CIDP and comparing how different treatments are effective or not......

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