More than 200 specialists from different areas of medicine participated on these two days to exchange and present the results of the latest research in developmental biology, pediatric surgery, the management of reflux, stenosis and other problems associated with OA, which included presentations on the psychological impact of OA on parents and patients.
Besides the expert audience there were also present OA survivors, parents and representatives of support groups, who also made presentations in a section of the symposium entitled ‘Influence of OA on the Quality of Life’.
The congress demonstrated that over the last few years considerable progress has been made especially in areas such as keyhole surgery and the diagnosis and treatment of reflux, but it also true to say that no international consensus so far exists in a number of other key areas. For example: what is the definition of ‘long-gap’ OA?, what is the most appropriate surgical technique (eg: thoracoscopy vs. thoracotomy), what is ‘best-practice’ in post-surgical care and longer-term after-care? These remain contentious issues amongst members of the medical community and a number of these topics were vigorously debated during the ‘Questions & Discussion’ sections which followed each presentation. It also emerged that a number of areas which the OA Support Groups have expressed concern about are being addressed in certain parts of the world: for example the allocation of psychologists into paediatric after-care clinics, and the establishment of Adult Tof clinics at a number of centres including Montreal itself.
One area where, gratifyingly, unanimity reigned was the recognition of the importance of support groups in the treatment and care of patients with OA. EAT, the European federation of OA support groups (of which TOFS is a founder member) was represented by its Chairman, Graham Slater, its Vice-Chair JoAnne Fruithof (from The Netherlands), Philipp Schwabl (from Austria) and representatives from France and Italy.
The origins of EAT go back to the co-operation of the Support Groups at the 1st International OA Symposium in Lille, France in May 2010. In Montreal EAT was able to raise its profile and demonstrate its strength in developing Europe-wide, indeed world-wide, networking not only amongst its member support groups but also in its engagement with the medical community.
Recently, a new Support Group has been formed in Italy, and there are hopes that one will soon be founded in Poland, supported by the enthusiasm of two leading Polish paediatricians who were present in Montreal, and who are keen for such an organisation to join EAT. In addition, there were representatives of AQAO, the support group based in the Quebec province of Canada, and OARA from Australia. Both these groups have joined EAT as associate members’, a form of membership open to support groups from outside of Europe.
In the exhibition area of the symposium in Montreal EAT had its own stand with information and publications available in the different languages of its various member associations. This reinforced EAT’s presence and demonstrated the importance of the Support Groups and their collaboration.
Despite a crowded agenda there was still time for exciting discussions and animated exchange between all the participants. The atmosphere was very positive and many important contacts were established. EAT also had the special honour of being asked to announce during its presentation that there will be a 3rd International OA symposium to be held in Rotterdam, The Netherlands, on the 2nd and 3rd of October 2014. (Please note these are provisional dates; confirmation is expected shortly). EAT has also been asked to be a member of the organizing committee of this symposium and this role will be carried out on behalf of EAT and all its member associations by its Vice-Chair, JoAnne Fruithof.
In summary, the congress gave a clear signal that many well-motivated people are pulling together in the same direction. It was a real pleasure to be there, for EAT and the individual support groups to be seen increasingly as partners of the medical community, and for us – the authors of this article – to have our views, particularly as OA survivors, to be taken seriously.
Graham Slater (TOFS Trustee and Chairman of EAT) and Philipp Schwabl (KEKS Austria)
The synopses of all presentations made at the symposium in Montreal are available on-line at:
http://onlinelibrary.wiley.com/doi/10.1111/j.1442-2050.2012.01430.x/abstract
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The 7th international Conference on EA will be held in Istambul, Turkey, in 2025.