The unpredictability of epileptic seizures is one of the key challenges people with epilepsy face. We need to find ways to assess daily seizure risk, better identify seizure triggers and understand individual seizure cycles. The ability to forecast when seizures are more likely to happen could make a life changing difference for people living with epilepsy. So, we decided to design a procedure that will allow people with epilepsy to use new technologies independently, comfortably and safely in their home.
In the last few decades, huge progress has been made in developing efficient, user-friendly smartphone apps and wearable devices that allow long-term monitoring of seizures. First of all, different smartphone apps allow patients to collect and share information in real-time with healthcare professionals regarding medication, seizure types, sleep quality, stress or other information related to seizure occurrence. New wearable devices like smart-watches have also been developed to detect specific seizure types (i.e. tonic-clonic seizures) using information such as an individual’s heart rate. And finally, new portable EEG devices that allow patients to freely move when worn, are now being tested in different studies, with some already available on the market.
People with epilepsy are ready and motivated to use new technologies like these to better manage their condition, however, they are not widely available in clinical practice, as standardised and validated procedures are not yet in place.
Thanks to support from Epilepsy Research UK, we had the opportunity to combine new technologies and design a research study called EEG@HOME. The project investigates whether using smartphone apps and wearable devices to take frequent measurements is practical, effective and well-received when performed independently by people with epilepsy. The procedure involves the use of an easy to apply new portable EEG cap with dry electrodes (waveguard touch; ANT Neuro), a smartphone app (Seer app; Seer Medical) and a wrist-worn device (Fitbit Charge 3; Fitbit Inc). Participants are initially trained to record data autonomously every day including their scalp EEG, non-EEG bio-signals (heart rate, sleep quality index and steps) and data related to seizure occurrence (medication taken, sleep quality, stress and mood) and then monitored remotely for 6 months.
Participants who took part in the EEG@HOME study shared their experience and why research is important for them:
“Once I included the EEG sessions into my daily routine and became familiar with the procedure, I found it an excellent research study to be a part of.”
“It’s as if now for the first time a tool has been put together to obtain data from the body and the brain in a consistent manner. Rather than just picking up medical information and reading EEG results at brief intervals throughout the year. This EEG@HOME programme will be of great service to the Consultant in regularly obtaining the missing pieces and linking them together as one would complete a jigsaw. Diagnosis and treatment will be hugely improved.”
“There’s more to epilepsy than meets the eye. It is a condition that has been hard to understand and treat by the medical field. And particularly by those of us who want to get on with normal living but keep getting knocked off ‘the ladder’ after each seizure. Self-management can be a difficult task especially when there is a lack of understanding to our questions WHY? WHAT? WHEN? Everything is changing these days, so I chose to become involved in a research study rather than just living with this condition and managing my lifestyle around it.”
Having a procedure providing key information about periods of higher seizure risk is a big step in the use of seizure forecasting techniques to better manage epilepsy. It will help people with epilepsy to increase their self-management, avoid situations that could worsen seizures or cause seizure-related injuries, and improve the remote monitoring and treatment of this condition. The pandemic demonstrated the necessity to have processes that enable the monitoring of patients directly from their home without requiring access to clinical facilities.
We are pleased that the protocol of the study was published in the JMIR Research Protocol Journal. We hope this will help other researchers to develop and apply a similar approach to study other chronic disorders.