Best practice implementation in the management of patients with NMDs

8 Sep 2011

Prague, Czech Republic

41st EAMDA Annual General Meeting and TREAT-NMD training course: "Best practice implementation in the management of patients with NMDs"

From the 8th -11th September in Prague, the Czech Republic Association of Muscular Dystrophy hosted the 41st Annual General Meeting of the EAMDA and, in conjunction with it, a TREAT-NMD Training Course on “Best practice implementation in the management of patients with NMDs”.

The one-day course was organised by the ENMC in cooperation with Thomas Sejersen (Karolinska University, Stockholm) and Stanislav Vohanka (Neurology Department, Brno University). It was attended by 23 neurologists mainly from the Czech Republic.

During the morning session, it focused on the TREAT-NMD activities to disseminate the most updated concepts on standards of care, particularly in the paediatric population affected by Duchenne muscular dystrophy and SMA. Other lectures targeted the management of respiratory issues and prevention of cardiological problems. Attention was also given to the physiopathological mechanisms of dysphagia and how to counteract malnutrition.

The afternoon session addressed how to follow up muscle function in the paediatric population, both from the rehabilitation perspective of maintaining or regaining function and wellness in children’s daily lives and from the medical point of view of employing suitable outcome measures in clinical trials or of monitoring children during routine hospital visits. The discussion highlighted areas where major gaps are evident in respiratory care (which in some places still lacks necessary equipment and trained personnel), prevention of cardiological dysfunction and implementation of good clinical practice in rehabilitation and use of proper orthopedic devices.

The course was also a good opportunity to talk about the CARE-NMD initiative. The Czech Republic is a partner in the project and Petr Vondracek, the Czech coordinator, illustrated the activities being implemented in the country.
Proceedings of the course were distributed to all participants, together with the standard of care guidelines for DMD and SMA (available Czech) and other information on TREAT-NMD. A questionnaire to evaluate this training course and to gain further insight into current training needs was distributed to participants with 78% returned. In general, the topics addressed by the course were considered of high relevance and the presentations were much appreciated. Interest in further training was reported by the attendees, almost all indicating the following aspects as major areas of interest:

  • diagnosis and analysis for muscle biopsies;
  • neuromuscular and pharmacological management;
  • information about and involvement in clinical trials.

The course encouraged a multidisciplinary approach and served to increase collaboration between specialists, such as pulmonologists, cardiologists and rehabilitators, with the aim of improving the care provided to NMD patients. Many specialists indicated that the information gained will contribute towards changing their practice. Moreover, personally attending the course provided the opportunity to discuss their activities and promote further interaction as well as strengthening international collaborations.

Organizing a one-day TREAT-NMD course in conjunction with the EAMDA annual conference has become a tradition in the last few years, and several speakers attending the course were invited, as ever, to discuss their current views on the standards of care and prevention of disease complications with the neuromuscular community.

The medical part of the EAMDA conference was devoted to new approaches and research results at the European level. The lectures showed how care of people with neuromuscular diseases is managed in other countries and underlined the importance of multidisciplinary care in this field. The necessity and the role of specialized neuromuscular centers where people with disabilities can receive adequate care were also emphasized. Local doctors have come to the conclusion they need to review some of their existing practices and approaches.

The second part of the conference was dedicated to social aspects presented by various neuromuscular patient associations from different countries. From the proposed topics, the following  presentations were selected:

  • Home sweet home: an associative experience of independent living;
  • Social aspects of disability;
  • Living with Muscular Dystrophy;
  • PC voice control;
  • Legal framework for status of persons with neuromuscular disorders in Serbia;
  • Restorative rehabilitation of people with NMD in Izola, Slovenia.

The need for cooperation among countries and the exchange and dissemination of their experiences was highlighted in both events. The training course and the professional part of the EAMDA conference were organized with major assistance and support of TREAT-NMD and the ENMC. The role of the EAMDA must also be underlined, which helps individual countries to organize this event each year, thus supporting the promotion of discussion on neuromuscular disease issues.

More details on the conference will soon be published on the EAMDA website.

"Both events were of a very high professional level and helped to promote the issues of people with neuromuscular diseases in the Czech Republic and beyond. The repercussions of the conference locally are very good. The training course was very useful. But we can’t rest even now. Still a lot of work to do!" Dona Jandová Zalmanová

We would like to express our gratitude to Glaxo Smith Kline which generously contributed by sponsorship of the training course and also the participation of some of the speakers in the EAMDA conference.

General considerations on training and dissemination activities in the CEE countries

These training activities coordinated by the ENMC contribute to building up relationships with the NMD community in a large part of Europe (and neighbouring extra-European countries) that still struggles to guarantee NMD patients and their families information on their condition and high standards of care.

A lot of information has been collected that contributes to the building up of a picture of the training needs and interests in the CEE. In particular:

  • Input has been gathered from participants in order to better tailor the training on offer;
  • Topics of interest for future training courses have been collected;
  • Countries and specialists interested in co-organising training courses have been identified;
  • The TREAT-NMD network has been expanded and its outcomes disseminated;
  • Increased insight was gained into the existence of registries and the availability and state of implementation of standards of care in different countries;
  • New collaborators will be identified and directed towards the partner responsible for a specific activity (i.e. for registries, standard of care, clinical sites).

The organisation of local training in the last few years has been a collaborative project developed with a network of specialists that made their expertise available to their colleagues in the CEE countries and a network of Patients Organisations that identified the topics of major interest and directly collaborated in the organisation of the events. We would like to express our special thanks to all of them and to Katelijne Senden and Maryze Schoneveld van der Linde, the TREAT-NMD fellows for the ENMC who contributed to this project with professionality and dedication.

Harmonisation and strengthening of interactions between patient associations and clinical academic centres and specialists is a continuous process that should be further fostered both at the national and international levels in the future.

Anna Ambrosini - Fondazione Telethon, Italy and ENMC Chair of the Executive Committee
Dona Jandová Zalmanová - Association of Muscular Dystrophy in the Czech Republic