Update 22 - Survey Results Part 9

The survey these results are based on is still running and will until the 12th of March 2013.  So please can anyone who has GBS/CIDP or related conditions please fill in the survey (if they have not already).  It it located at:

http://gbs-cidp.questionpro.com

The results below are about physical treatments and the spread/symptoms:

These are the main Physical treatments listed. I have taken Exercise Program to include any sort of exercise and Hydrotherapy to include swimming.  The two graphs below are for GBS & CIDP:

The wide variation seen in the results above are entirely expected, as in theory GBS is (acute) therefore the majority of people who had this disease have recovered to some degree or another.  For CIDP there only one quarter who have no treatments and I would have expected this to be higher. Don't forget this is those who answered this particular question and as the numbers were fairly low in comparison to the total, the others may not have had any, but not stated so.

For my own condition, I am in the CIDP/None camp, this is primarily down to the fact that all I seem capable of is going to work and eating/sleeping, if I try and exert myself anymore then my body just overloads and as I have to earn a wage for my family that is all I can do.  I am ever hopeful the situation will improve.....

Regarding the spread of the condition:

As can be seen the spread is primarily inwards (defined by me as from the extremities into the core, so feet and hands first).  There is some minor variation between GBS & CIDP.  With GBS having a higher number with inwards (106 to 95) and CIDP having the majority of people who answered Outwards (25 to 12), so two thirds.

The symptoms are clearly the same for both sides of the body. With no real variation between GBS & CIDP or male & female - this is not surprising.  There are not enough answers for me to analyse the results for the other variants.

Next time I will be looking at nerve pains.....

Update 21 - Survey Results Part 8

When I started this survey and analysing the results I never thought I would get this many and this far (in a way I am sorry it has taken so long for me to publish them)!

This section starts with the treatment periods.  Below is a comparison graph, between the numbers of treatments being provided for GBS (red) and CIDP (green):

This is a very interesting comparison of how frequent people are being treated.  The vast majority of GBS sufferers are either having daily treatment or none, yet for CIDP it is either daily or monthly (which is what you would expect, given the differences between the diseases?).  I am presuming that daily are pills (e.g. Steroids) and monthly is Plasma/IVIG.

The Details:  40% of people with GBS have no treatments, yet less than 4% with CIDP do.  41% of GBS have daily treatments and 23% of CIDP.  At the other end of the scale; around 10% of those with CIDP have treatments every 2 or 3 weeks, with 33% having treatments every month (or 4 weeks), whereas only 7% of GBS have monthly treatments. The average treatment period for those with GBS is every 4.6 days, yet with CIDP it is 18.6 days.

 The differences between males and females is either pretty minor with males having more daily treatments (37 to 24) and females having more 3 weekly and monthly (39 to 29).

Below are the graphs on how mobile people are (split into Overall, GBS, CIDP, Male & Female):

There are some interesting differences between the groups:

• Very few are completely bed bound and none of those with CIDP are.
• 27% of those with GBS and now run and only 15% with CIDP (personally if I had to "run for my life" I'd be dead! - it is not an option)
• 68% of those with GBS can run or walk compared with 59% of CIDP
• 23% of those with CIDP use a cane/stick and only 15% of those with GBS (this must be linked to the previous point from a simple numbers percentage)
• The only point from the male and female statistics is that males use canes/sticks much more (24% to 13%) 

Next I reviewed the external care required, see the table below:

What really surprises me is that 80% of people said they needed no external care.  Now this may be my fault for the way the question was phrased: "Do you need external care - others to look after you?".  I meant this to include any one else, e.g. family as well and due to such a high "No" response, I wonder if some answered in this way.  Still it is an excellent and significant number who do not need any assistance from others.

At the other end of the scale only 9% need help for everything, which is also encouraging.  Looking across all the categories the numbers are remarkably consistent (and because 80& don't need help, very low).  

I added a couple of heading from the Other answers, driving and chores, as they seemed to be worthwhile.  I do understand that some people may have overlapped answers/categories and those be covered elsewhere, but that is the problem with any survey/questions (whether verbal, written, web or any other), how do you phrase a question to ensure that all respondents understand exactly what is meant and answer in exactly the same way/terms/scale as everyone else.......

You Can't

Update 20 - Survey Results Part 7

Minor delay between this and the last one due to a trip to Paris (business).  My one observation is that all hotels throughout the world now look the same and I'm sure the air is!

This is the last part of the results around the effects of treatments.  I tried to do some analysis based on gender and illness.  The tables below show the different results for Males & Females with either GBS or CIDP:

  

To see these results graphically, I have produced the following charts:

The above charts and the ones for CIDP below are shown as a percentage of the overall people who have recieved these treatments, so the scale is a percentage and not a number.  For the specific numbers, please refer to the tables at the top of this section.

What these show, along with the tables, is that the actual treatments with most effect on GBS are IVIG and Plasma.  Also the tables show that these are the two most recommended treatments as well.  Steroids do seem to have some effect, but less on Males than Females for GBS.  Immuno-suppresants appear high in the chart for Females, but this is due to only 3 samples being available, so this is too few to draw a reasonable conclusion from (in my opinion).

These again show IVIG as being potentially most successful, though Steroids do have a more major impact (especially for Females).  It also does seem that Immuno-suppresants are used much more with CIDP, though there success rate is questionable (again higher with Females).

Please note these are statistics produced from the survey and not specific recommendations to any one about treatments.  If I could I would love to examine the treatments recommended against location in the countries/world, but I do not have enough data to go on.

This concludes the treatments and their effectiveness based on the 350 completed surveys from August 2012. Next I'll be looking into the treatment periods and how people are coping.

Update 19 - Survey Results Part 6

The next set are concerned with differences between female and male treatments/effects:

The graphs above show a similar ratio of the types of treatments, though as slightly more females have filled in the survey there are more results for them (281 against 265).  What is interesting is that the number of other treatments and their effect on females is much higher than males.  The actual treatments recommended, percentage wise, didn't vary much at all between the two for the normal ones.

Below are the effectiveness charts for each treatment against males and females:

 As you can see, and has been the case throughout the effectiveness of treatments across all segments, IVIG has a significant impact on both males and females.  However it does seem to have a better major effect on females (10% difference), whereas males are higher in the minor/none categories?

Steroids seem to follow a similar pattern to IVIG, however though the Major effectiveness has a 5% difference, the some is much higher with females (14%), thus the minor/none are much higher.  This does seem to indicate (even more than with IVIG) that there is a significantly better effect of steroids for females.

There is definitely a pattern forming with the males having Plasma being improved way less than females, what is most interesting here is the difference between the none's (18%).  That in my view is massive.

This one is even worse than the other three, with females having a much more positive reaction to this treatment than males, there is 20% difference between the major effectiveness.

Please note the actual numbers of people having the last two treatments is much lower than for IVIG and Steroids, so this may be impacting the figures slightly.  However it can't be disputed that there is a pattern of better reaction to treatments in general from the females than the males.  Now work that one out?

Update 18 - Survey Results Part 5

This is a very long posting, but hopefully the information on the comparison between GBS and CIDP for each treatment is worth it. The first two graphs are on the effect of treatments:

It is clear that IVIG is by far the most recommended treatment for either condition (118 for GBS & 143 for CIDP).  Yet Steroids are recommended much more for CIDP & Plasma for GBS.  The percent details for each are shown below:

The above do show the difference in the treatments more clearly than the first graphs.

Below are graphs for the effectiveness of each treatment:

These again show the definite leaning towards IVIG as the recommended treatment and how much more steroids are used for CIDP.  The point of showing the information is this way is that the actual numbers for certain treatments (e.g. GBS & Steroids - 20 & Immuno-suppressants - 10) is very low so the following pie charts may be skewed and not properly representative:

This chart shows that IVIG clearly has a significant benefit to the majority of people with GBS.  So it is not surprising that this is the most recommended treatment too.

Steroids do have some benefit, but the ration of major to none is very similar and the sample size is small, so can be affected by a few results.

Plasma has a slightly better success rate than IVIG, but I understand it is more expensive and difficult to administer (please note as I never had or was offered this treatment I do not know, so apologies if I have got this wrong).  It is clear that this is a good treatment against GBS.

Immuno-Suppressants have some effect, but as the sample size is small, this really has been impacted by one or two results.

Now we move onto the same chats for CIDP:

Again IVIG has a significant effect on CIDP as with GBS, with almost exactly the same percentage scores (spooky!).  This is proof why it is the most recommended and used treatment.

Steroids have a pretty good effect on CIDP, much better than for GBS, but there are still a significant number of people it has no effect on.

Plasma is much less effective against CIDP than GBS, but it obviously still works for a fair number of people (18 out of 33, just over half).

Immuno-suppressants again have much less effect against CIDP than GBS. though the number it is proscribed for are much higher for CIDP (47) against GBS (10)?

Obviously before deciding on a treatment other factors have to be taken into consideration e.g. potential side effects, ease of administering or availability of the treatments, other health issues..... Which I have not explored and these may have a significant bearing on the results/recommendations above.

From the above data it is easy to see patterns.  What I wonder about is why certain treatments do not work for some patients?  I guess we will never know..... or not from me!  More in a couple of weeks.

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......