With planning for the 33rd International Symposium in full swing, we are back chatting to Silverio Conte, Chief of International Relations at Associazione conSLAncio Onlus, about the experiences of last years Symposium and the research the association presented. Associazione conSLAncio Onlus, is an all-volunteer, multidisciplinary Italian ALS Association and you can learn more about them in their previous guest blog post here.
In 2021, conSLAncio became the first Italian, patient led, ALS Association to present a scientific poster at the 32nd International Symposium on ALS/MND and present at the 2021 Annual Meeting of the International Alliance of ALS/MND Associations for the second consecutive year.
What did you present?
The poster, “Improving Online Caregiver Training for ALS and Complex Fragile Patients Using Design-Build in Italy” (CMS-09) featured the 2021 launch of Italy’s first free online caregiver training program that is available 24/7 . This project improved accessibility to online caregiver training courses for ALS and complex fragile patients in Italy.
How did the project come about?
The necessity of a free online ALS and complex fragile patient caregiver program available 24/7 in Italy became evident as the COVID-19 pandemic began. As Italy was one of the first affected countries, this suddenly impacted access to previous training programs which were costly, only offered sporadically and often varied in the content and experience for caregivers, families, and healthcare assistants. In order to continue fulfilling our mission to support the ALS community, our team had to rapidly find and develop a solution. This new caregiver training program was produced using conSLAncio’sinnovative Design-Build project delivery systemwhich debuted at the 31st International Symposium on ALS/MND 2020 and the 2020 Annual Meeting of the International Alliance of ALS/MND Associations.
What is covered in the course?
The objectives of the course are to:
- Improve the qualitative processes of the procedures that caregivers have to manage, especially at home;
- Instruct caregivers on the latest best practices and guidelines that all medical professionals are obliged to adhere to in order to prevent free interpretation by healthcare providers themselves;
- Provide valuable training on effective communication for positive benefits in the care setting for the psychological well-being of all involved;
- Establish a bridge between families and conSLAncio to develop better intervention protocols that are feasible in the home.
The training course covers 14 essential topics. These include artificial nutrition, home care profiles and effective communications to name a few. For added support, the online training program is available 24/7 and offers technical support. You can find out more about the course on the website here.
Watch Silverio’s poster ‘lightning explainer’ video:
What does it mean for the MND/ALS community?
In the first ten months of the course, 136 users were enrolled and 36 completed user surveys were received. The early data showed widespread enrollment throughout Italy and Switzerland. It was observed that 42% of users were caregivers, 39% were healthcare assistants, and 19% were other personnel. This suggests the necessity of a caregiver training course across various care roles in Italy. The majority of users (58%) discovered the course through Facebook which suggests social media is where most individuals seek support. Most users (97%) recommended the course to others. A free online caregiver training program for ALS and complex fragile patients available 24/7 significantly improves user access. Further work is necessary to improve content with feedback from the clinical and caregivers’ fields, while assessing the effectiveness of our program in practice.
What was it like presenting your poster?
The occasion was a special honour for our team to present the first of its kind online ALS and complex fragile patient caregiver training program in Italian. One of the most important aspects of scientific research is the concept of peer review, where members of the community evaluate the work presented. We are grateful to the many experts who tuned in to share their invaluable feedback to guide improvements and future work. Just like the first intriguing virtual symposium experience in 2020 preparing the presentation required exceptional remote global teamwork.
What were your highlights of the Symposium?
Last year’s Symposium began with the wonderful news of our Dr. Silvia Pozzi, PhD of the CERVO Brain Research Centre, Université Laval, QC, Canada winning the 13th Paulo Gontijo Award 2021. Named after the founder of the Brazil-based institute, Mr Paulo Gontijo, the award recognises and encourages research into the disease by carefully considering recent scientific contribution that increased the understanding of ALS/MND. It was also exciting to learn how new trial designs and scientific approaches are emerging to advance quests for new treatments and knowledge of ALS/MND pathology. As many aspects of support were impacted by the COVID-19 pandemic, the Symposium and Alliance Meeting presented numerous initiatives to better support persons affected by ALS/MND with care, psychological support, and caregiver needs (to name a few), which are just as urgent and crucial as finding effective treatments.
The symposium also introduced us to many talented delegates worldwide. Thanks to this, we are delighted to give a warm welcome to the new members of our Scientific & Medical Advisory Committee who also presented their work: Monica Consonni, Elena Grossini, Vittoria Lombardi, Marco Peviani, and Daisy Sproviero. The International Symposium on ALS/MND is the best event of the year to learn the latest research!
We appreciate the extraordinary efforts of all the patients, caregivers, and volunteers worldwide who help us achieve our mission: Ilaria Barone, Mattia Belloni, Alessandro Boaro, Francesco Boccalatte, Lara Brambilla, Valentina Cattero, Simone Cimino, Pier Paolo Comida, Angelica D’Amore, Vittoria A. Farallo, Nicolò Giordano, Ester Luna, Ilaria Luna, Sean Mannion, Nicola Marinelli, Paola Mastracco, Deborah Metzel, Elisabetta Mezzalira, Peter G. Nalepa, Ostap Nalysnyk, Cristina Onesta, Alessandra Pecora, Tiziana Petrozziello, Nicoletta Pireddu, Aleh Plotnikau, Elisabetta Pupillo, Giulia Supino, Luca Zampedri and Cinzia Zicchieri.
We also thank the MND Association for sharing our work with the global community.
- Zicchieri, A., De Rossi, N., Desiderato, A., Conte, S., Pozzi, S., De Marchi, F., Contessa, P., Bedlack, R., Ayala, J., Ghiro, I. (2021). CMS-09: Improving Online Caregiver Training for ALS and Complex Fragile Patients Using Design-Build in Italy. Poster presented at the Motor Neurone Disease Association Virtual 32nd International Symposium on ALS/MND.
- Zicchieri, A.D., Conte, S.F., De Rossi, N. (2020). CMS-27: Using a Design-Build Approach to Improve International ALS Research News Access in Italy. Poster presented at the Motor Neurone Disease Association Virtual 31st International Symposium on ALS/MND.
We would like to thank Silverio for writing this guest blog for us.