This blog is part of our Symposium Blogathon series – where we are counting down to the 33rd International Symposium. Numbers in bold blue type correspond to the code in the abstract book. Click on the number to be redirected to the full abstract.
Technology plays an ever-increasing role in our daily lives and during the COVID-19 pandemic the development of new technology exploded around the globe. It became more important than ever in communicating with others and providing access to healthcare services without the need to leave the house.
Telemedicine uses technology to enable healthcare professionals to monitor people’s health from afar. This allows people to rapidly and more frequently share information with healthcare providers so that care can be delivered remotely and quickly adapted as needed. Remote monitoring can increase access to care, whilst also reducing the number of clinic visits which can be difficult for people with MND to travel to.
Online psychological support
Researchers from Amsterdam University Medical Center have been developing an online tool to help deliver a form of psychological support, called ‘meaning centred psychotherapy’. This type of therapy encourages people to focus on what is meaningful to them and what is important to them now and in the future. The team have adapted this face-to-face therapy to an online version which has been specifically designed for people who are newly diagnosed with MND. In this poster presentation (COG-01), Sandra de Moree will discuss whether people with MND found this therapy acceptable, practical and helpful in improving quality of life.
Web-based decision aid for gastrostomy
Some people with MND experience severe swallowing difficulties and one of the long-term support options to help with this is to have a gastrostomy. Making the decision about whether or not to have this can be difficult and a new web-based decision aid, called Gastrostomy Tube: Is it for Me?, has been designed to support people in making this choice. Dr Sally Wheelwright, from Brighton and Sussex Medical School, will present a poster (CMS17) on the results of testing the decision aid with people with MND, carers and healthcare professionals to determine how well accepted and useful it is when making the decision. This study has been funded by the MND Association.
Blog | 22 February 2022 | Research Team
How technology can play a role in connecting with the people you love
Apps and devices to track disease progression
Disease progression is currently measured using the ALSFRS-R, with questions usually being asked by a healthcare professional in a clinic setting. Responses to this scale could be collected more frequently if people with MND could complete this scale at home using mobile applications. Researchers at Harvard University have been investigating if data collected via mobile applications and wearable devices, such as activity monitors, can be used to accurately measure disease progression. Dr Marta Karas will present a poster (CLT06) detailing the results of a trial where people with MND used this technology for 6 months to determine whether it could be good way to monitor progression of the disease.
Online nutritional education
Previous research has shown that poor nutrition and weight loss in MND is associated with faster disease progression and shorter prognosis. It is thought that people with MND and their carers may benefit from increasing their knowledge on how to maintain a good nutritional status throughout the course of the disease. Researchers from the Federal University of Rio Grande do Norte have been developing online learning modules on food and nutrition in MND. In this poster presentation (CMS23), Karla Coutinho will provide an overview of how this was designed and what the online education tool currently includes.
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