Summary, published in Epilepsia Open
Objective: Resources for management of epilepsy in Africa are extremely limited reinforcing the need to develop innovative strategies for optimizing care. Studies have shown that the prevalence of epilepsy in low- and middle-income countries is substantially greater than in more resourced countries. The objective of this report was to demonstrate that mobile Health (mHealth) technologies have the potential to improve the management of epilepsy in Africa.
Methods: The feasibility of technology-based home monitoring was investigated in an observational study of 40 children with refractory epilepsy or epilepsy associated with intellectual disability and/or behavior difficulties in South Africa. Technology-based home monitoring was implemented for six months. Physical activity, sleep and heart rate were continuously monitored with a wearable device. Caregivers completed regular mobile Patient Reported Outcomes (mPROs) and reported seizures and ad-hoc events using a dedicated app. Feasibility was assessed and descriptively measured for recruitment, retention, and engagement of the participants.
Results: The mHealth technology was able to capture important information that gives an impression of the overall experience of the children and their caregivers. Thirty-seven participants (94.9%) reported at least one clinical event. Seventy-nine percent of caregivers reported seizure events in their children, which were the primary event anticipated. Median engagement with the wearable device and monthly mPROs was 30.8% and 57.1% respectively. However, most participants (87%) had to be given smartphones for them to have Bluetooth capabilities and access to the study app. Tolerability to the device was impacted by the difficult living circumstances of caregivers that induced fear of loss or theft.
Significance: The study showed how the use of remote patient monitoring in the form of mHealth can benefit epilepsy patients, despite highly variable engagement with the technology. The combination of mobile patient reported outcomes and wearable devices generated informative datasets that will allow clinicians but also the children and their caregivers to better understand and manage the disease.