UCB Survey results
Thank you to everyone who participated in the recent UCB study looking at the associations between AEDs and quality of life. This study was conducted by UCB in collaboration with the Chronic Illness Alliance, Epilepsy Australia, Epilepsy Foundation and Epilepsy Action Australia. The results of the survey were presented at the ANZAN 2019 Annual Scientific Meeting in Sydney this May.
Over 950 people participated in the study, and responded to questions about themselves, their quality of life, side effects related to their medications, and other comorbidities. This was an important look at living with epilepsy among people in the community, as a lot of research to date focusses on the experience of newly-diagnosed epilepsy, or severe epilepsy in hospital settings.
The study found that psychiatric comorbidities and memory problems were very commonly reported among people living with epilepsy, and both were particularly reported as having a negative effect on quality of life.
Further details can be found at the link below:
Social media is increasingly being used as a source of information. A recent study of the use of social media for epilepsy information found a 100% increase in the number of Facebook and Twitter accounts relating to epilepsy between 2012 and 2016. The most commonly discussed themes on these pages related to providing information about medications and misconceptions about epilepsy, as well as providing support, and product advertisement. Much less was posted about specific treatments, such as surgery. The authors noted that care should be taken when looking for epilepsy-related information on social media to identify credible sources from commercial marketing sites.
Study: Meng, Y., Elkaim, L. Wang, J. et al. (2017). Social media in epilepsy: A quantitative and qualitative analysis. Epilepsy & Behavior, 71, 79-84.
Researchers are investigating the use of smartphone Apps (e.g., Sydney Children’s Hospitals’ EpApp) for improving epilepsy knowledge, storing medical info and seizure diaries, and providing medication alerts/ reminders. A recent study of the EpApp for teens with epilepsy found that it significantly improved epilepsy knowledge and medication management. Smartphone apps have the benefit of being easy-to-use and easy-to-access. Again, care should be taken to identify credible apps – it may be worthwhile discussing options with your doctor or specialist.
Study: Le Marne, F. A., Butler, S., Beavis, E., et al. (2018). EpApp: Development and evaluation of a smartphone/tablet app for adolescents with epilepsy. J Clin Neuroscience. Doi: https://doi.org/10.1016/j.jocn.2018.01.065
Personalised seizure predication
Recent research from the University of Melbourne and IBM Research-Australia is looking at creating a wearable, real-time seizure warning system. Using artificial intelligence (AI) technology, researchers have analysed brain signals from retrospective patient data and were able to use this information to successfully predict an average of 69% of seizures. While it may be a while before we develop a reliable means of predicting seizures, these initial results are very promising.
Study: Kiral-Kornek, I., Roy, S., Nurse, E. et al. (2018). Epileptic Seizure Prediction Using Big Data and Deep Learning: Toward a Mobile System. EBioMedicine, 27, 3-4.