GMFCS curves – the fundamental benchmark: No more ‘wiggle room’ and ‘muddy waters’ for the prognosis of ‘hawkish’ interventions.
Words of caution/ discretion advised:
LONG POST WITH A COUPLE OF EXTRA LINKS TO MORE READING…
I couldn’t manage to make this post light-hearted. If you feel that harsh exposure to reality is going to make you feel uncomfortable – probably you should skip this post.
If we are any serious in approaching the Cerebral Palsy 'peacenick' vs. ’hawk’ dilemma, the first thing we should be talking is how to evaluate and compare the performances and outcomes – otherwise we’d end up with a divide that is just purely ideological.
As the very first step we need the benchmark… Without the benchmark to compare to – any meaningful evaluation is difficult – the winner will always be defined by the loudest mouth and the strongest authority backing.
For many generations of families affected by Cerebral Palsy that was the unfortunate reality. The entire Cerebral Palsy field was defined in super-blurred categories of ‘mild’, ‘moderate’, ‘severe’ – where it was impossible to pin down any true efficiency.
These muddy waters created a very peculiar situation that most of you are familiar with.
On the one hand, the literature and conference proceedings always had the same gloomy prefaces and intros: ‘the problems are still unsolved and poorly understood’; ‘general prognosis remains grim’ etc. – describing very pessimistic overall picture.
On the other hand, if you were to meet any particular, local medical specialist – you were most likely to experience a lot of pressure for ‘hawkish’ methods: each and every of them would beat oneself on the chest with examples of incredible progress children achieve following his interventions and at the same time drawing some really horrific pictures of the future for those ‘infidels’ who dared to doubt the ‘hawkish’ path.
Globally it was acknowledged that there was not much known and much to be done for children with Cerebral Palsy, motor function outcomes are unpredictable and not necessarily being better than the natural evolution without any forceful intervention; however, locally you were most likely to meet an ‘alpha-hawk’ – a ‘star’, a doubtless guru preaching the absolute necessity of ‘hawkish’ interventions who’d be looking for adoration and consider himself a real difference-maker…
You can still see the extreme muddiness of the mainstream approach to your children through a simple fact that official medical institutions/ specialists do not even bother to document the stages of transformations in your CP child by video or photo documentation. The main thing is the X-rays, that’s it – your child being reduced to the collection of black-and-white stills that exclude all the soft tissues including the ones that are directly responsible for movement...
My father used to comment on this X-ray logic, saying that the orthopedic surgeons should not waste time dating before getting married – since the live person was irrelevant; they just need to get the X-rays, spruce them up with a couple of range of motion tests and, voila, – that’s a solid enough base for tying the knot…
The healthcare professionals might have some charts or a few pages of scribbles on top of the X-rays with what sounds as elaborated verbal descriptions but a simple truth is – a picture is worth a thousand words. And what’s even more important – series of pictures or videos hand the power to you because you can compare them from year to year with your own eyes; whilst that paperwork is completely out of your reach and comprehension making.
Many of you have asked me about why I have recommended the book “Alternative Medicine: Trick or Treatment”. That’s one of many reasons – in the first chapter the authors walk you through the history of medicine: how stubborn the medical establishment could be in clinging on to the old beliefs and tools. The examples of persistence of blood-letting and refusal to introduce hygiene procedures illustrate extremely well how selectively the medical professional can cherry-pick the comfortable facts and dismiss the uncomfortable.
Finally things have changed – the group of academics from a CanChild project sponsored by U.S. National Institutes of Health formulated the system of testing called Gross Motor Function Testing (GMFM-88). 88 indicates that there are 88 tests in it. (There is also a GMFM-66 version with 66 tests respectively).
According to the results of GMFM testing the cerebral palsy kids are classified into GMFCS (Gross Motor Function Classification System), which identifies 5 groups – from the most severe (Level 5 – scoring less than 20% of the maximum result) to the mildest (Level 1– scoring more than 80% of the maximum result but less than a 100%).
CanChild group did the GMFM testing of over 600 children with Cerebral Palsy in the province of Ontario,Canada born in 1991-1992 for many years.
These kids had the access to all of the modern day treatments and were observed and ‘re-scored’ at regular intervals.
Any healthy child obviously should easily score the 100% in all 88 of GMFM tests.
of GMFCS groups GMFM results changes were plotted on the graph year after year.
result became the ‘GMFCS
Curves’ aka ‘Paths of Destiny’ for Cerebral Palsy children.
These curves were then re-confirmed in a number of other studies – particularly large ones being in Australia and Sweden.
I recommend visiting the following link to see one of the conference presentations made by CanChild ‘big guns’ – Ms. Russel and Mr. Rosenbaum
Today the GMFCS curves are widely recognized and undisputed as the legitimate expectations that both the practitioners and the parents shall be aware of: Facing the truth – the earlier the better.
From the tribunes of the conferences the leading academics appeal to the ‘field medical practitioners’ that they should educate themselves and educate their patients about the GMFCS curves.
To their surprise there is not that much enthusiasm by the cerebral palsy related medical professionals in educating the parents:
During the latest conference “Global Status Quo on Cerebral Palsy” I was quite stunned by the figure. Even in Holland – which beyond doubt being among the top 3 countries in the world by the scope of attention to CP and the number of professionals engaged into dealing with it – just 60% of interviewed medical professionals acknowledge that they knew about GMFCS curves but only 1/3 of them bothered to communicate this further to their patients.
The presenter stopped at that point expressing her surprise, however, the reasons for such a resistance among medical professional to educate families of their patients are easy to understand.
GMFCS curves clearly demonstrate the hopelessness of the traditional (read ‘hawkish’) methods.
Statistically they do not beat even the absence of any therapy!
For the extra illustrations and thoughts on these issues I have put a separate page on this blog with excerpts from my “ABR – Heresy In Physical Rehabilitation???” Lecture to medical professionals at University of Sydney, Holme Building, on Feb 24th, 2009.
Click on this link:
Or just look at the column on your right hand side ;-)
Educating patients about GMFCS curves is a “reputational suicide” for field medical professionals.
That’s obvious for any practically minded person. In the past a local ‘hawk’ enjoyed the comfort of a selective presentation of results supporting their ‘hawkish’ stance – not anymore. With GMFCS curves the ‘hawks’ are cornered:
If a local ‘hawk’ wants to continue to insist on a ‘success’ that he is having with forceful interventions –his claim must be a lot more specific – whether he has the ability to beat the GMFCS curve or not.
The forceful intervention methods for cerebral palsy are more or less the same across the entire developed world. That brings the first big question – how come this person is so ‘successful’ when the others cannot beat the curve with the same tools!? So either, a local ‘alpha-hawk’ should claim the invention of something new and have the rest of the world’s ‘hawks’ beating the path to his door, or he is just unable to overcome his own illusions – cherry-picking and misinterpreting his own results.
No wonder that there is no much enthusiasm in clarifying the meaning of GMFCS Curves to the patients by ‘field’ practitioners. They’ll resist shooting themselves in the foot for as much and as long as they can, trying to keep things murky….
GMFCS Curves are becoming the foundation of a truly seismic shift in the entire field of Cerebral Palsy management and rehabilitation –providing the ‘shocking truth’ realization, the mighty ’kick in the rear’ that shatters the comfortable illusions of the past.
At ABR we are welcoming accountability and maximum due diligence coming from you.
We want you to understand the reality clearly and respond accordingly – we are not in the ‘dream merchants’ business.
Upon learning of GMFCS Curves any goal setting for any child with cerebral palsy has to include them as a benchmark of reference.
It’s a very important subject with a lot of intricacies in it, obviously going beyond the scope of a single post.
In the future posts and videos I’ll be doing my best to help you with clarifying those implication – hopefully that will facilitate your decision-making.
As I said in the opening line for this post – I find it a serious matter and I couldn’t manage to make this post light-hearted.
My personal position is straightforward: I belong to those who prefer to face the truth, however challenging it is, and to develop a transparent strategy of dealing with it, rather than escaping the reality and chasing illusions by feeding oneself with myths...
However, that’s my personal position only others might have different opinions. On the other hand, ABR carries the print of this position and I really feel obliged to clarify it for you making sure that we are sharing the same values and talk the same language.
Thanks. Questions are most welcome.