Sunday, 30 December 2012

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:

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.....

Sunday, 9 December 2012

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