Wednesday, 7 November 2012

EVIDENCE-BASED

A medical scientist's perspective

Professor Jo Lebeer is a medical scientist at the University of Antwerp. He is also father to a young lady with cerebral palsy and Director of the project Learning Enhancement and Inclusion.

Earlier this year he wrote one of the Forewords for the book András Pető (the other two are from Professors Judit Forrai and Reuven Feuerstein).

Those concerned with questions of evidence-based practice might be interested in the following extracts from what Jo has written –

Twenty-five years ago we went with our daughter, then almost seven years old, to Budapest, to see for ourselves whether the Pető Institute could offer us better help than what we had found up till then in the professional rehabilitation sector in Belgium. She was a bright child, able to talk, to sit and to stand with support, but after seven years still not able to walk, because of a spastic tetraplegia. What was offered to us at that time were the classic neurodevelopmental treatment methods inspired by Bobath and Vojta, a low probability for developing independent walking and a future in a special education school, and wheelchair. After having seen two outstanding BBC documentaries Standing up for Joe and To Hungary with Love, we were captured by the profound wisdom, intelligence and applicability of Conductive Education. We immediately had a feeling of 'this is it', meaning that this approach confirmed our findings and lifted it over an individual experience. Like so many parents from the 'Western' world, we went in the footsteps of Joe’s parents on what might perhaps be called critically 'a pilgrimage', but what else can parents do when they have their backs against the wall?

During our first visit we also went to see Károly Ákos in his beautiful but poorly maintained flat. He had written some papers about scientific evaluation, so we trusted him as an independent voice. He looked at our daughter, played with her and gave us some simple but invaluable advice. Our experience at the Pető Institute was a revelation. It was a lesson for us as parents too; we learnt to look differently, to be more enthusiastic, to enjoy, to stimulate, to support when needed. We learnt in fact together...

I decided to do a PhD on plasticity and ecology, as I wanted to understand something more about rehabilitation. To my great surprise, my professional medical colleagues did not share my enthusiasm. And, being bound on an academic journey, I had to adopt a 'scientific attitude' and not take anything for granted. So that became a quest for evidence, or, perhaps much more for understanding. Statistical results about the Conductive Education method’s effect in existing and later studies remained controversial. When the American Academy of Cerebral Palsy issued a critical position paper (Darrah et al, 2004), declaring the evidence on Conductive Education insufficient, it virtually 'killed' Conductive Education, alongside the neuro-developmental treatments methods. The effect was that the medical rehabilitation professional world lost interest in studying the method further, and the scientific or educational financing bodies, advised by these colleagues, would not be prepared to grant any money to further research or implementation. Symptomatic of this movement was the replacement of Mária Hári’s chapter on Conductive Education by a chapter on goal-setting therapy in the 'bible' of cerebral palsy treatment (Scrutton et al, 2004). What I did not understand was why Conductive Education remained to meet so much scepticism, whereas NDT methods continued to thrive. Later I learnt that this was because NDT could be perfectly well accommodated within the existing medical paradigm, whereas Conductive Education represents a serious paradigm shift.

Pressured by the 'evidence based'-wave, we were tempted into following the advice of more well-established colleagues, proclaiming well-researched methods – and 'gave in' to Botox treatment and to an orthopaedic operation, that did not help but on the contrary provoked permanent damage. My scientific mind, however, also knows that individual experiences such as ours are no proof, or disproof. I recently came across two families of young children with serious cerebral palsy, who did not receive much prospect or results from undergoing the evidence-based rehabilitation packages. After starting Conductive Education, their prospects changed radically and their children made substantial progress in a short time. Even so, that is still casuistic story-telling.

Nevertheless, in June 2011 the President of the 11th Annual Meeting of the European Academy of Childhood Disability in Rome proclaimed that during the past thirty years, despite the modern cerebral palsy rehabilitation world's being inundated with botulin toxin treatment, treadmill therapy, multilevel operations, hyperselective dorsal rhizotomy, intrathecal baclofen or robot-aided rehabilitation, and despite accumulated scientific evidence, not one of these 'modern' methods has been able to change the Gross Motor Function Classification System level significantly. In other words, children who could not walk thirty years ago, still do not walk with these modern methods. On the same conference, an orthopaedic surgeon from India raised his voice to say that these expensive methods are inaccessible to the many poor people and we are in need of simple technology and human commitment.

András Pető told the same fifty years ago. He really appeared to be ahead of this time. Nowadays, ideas like goal-based therapy, community-based rehabilitation, activity-induced plasticity, that fit well into the basics of Conductive Education, are generally accepted by the scientific community. It is perhaps time to listen again to what András Pető really had to say.

Read the rest

You can read the rest of Jo's Foreword at:


You can also read thereJudit Forrai's and Reuven Feuerstein's Forewords and, if you wish, order a copy of the book itself.

Reference

Lebeer, J. (2012) Time once more to heed the original message, in G. Maguire and A. Sutton (eds) András Pető, Birmingham, Conductive Education Press, pp. xv-xvii  

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1 Comments:

Anonymous Sue O'Reilly said...

My personal favourite are these couple of sentences in Diane Damiano's 2006 article in Physical Therapy, the official journal of the American physitherapy association:
"Clinical dogma, UNSUBSTANTIATED BY RESEARCH [my emphasis, once held that movement quality be emphasized over movement quantity or functionality for a better long-term outcome. In contrast, current thinking is shifting toward a view that children need to be as mobile as possible, regardless to some extent of the manner chosen by them or for them."
Is that the sound of a penny dropping?? If so, only took these geniuses 65 years or so....

Thursday, 8 November 2012 at 09:12:00 GMT  

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