Epilepsy is a debilitating disease that poses a significant challenge in all settings, especially in those that are resource-limited. Difficulties in its management within such environments can be attributed to:
- Early diagnosis and access to care
- Medication access and/or non-adherence to prescription
- Limited visibility of seizure frequency and general well-being: seizure incidence and general well-being can be difficult for clinicians to monitor after patients leave a clinic so clinically relevant events may be missed
Tackling unmet clinical needs
Acknowledging these challenges, Aparito and Red Cross War Memorial Children’s Hospital (RCWMCH) were motivated to take action, launching the Precision Management of Epilepsy study where mHealth technologies were combined with genetic and pharmacogenomic analysis to improve the treatment outcomes of children with refractory epilepsy in Cape Town, South Africa. Qualitative research was also carried out in parallel to understand how epilepsy patients and their caregivers understood precision medicine, their experience of mHealth, and how the technology could be further developed to meet their needs.
Design and deployment of mHealth technology
The mHealth technology was powered by Aparito’s software platform Atom5™ and consisted of a mobile app paired with a wearable device. 39 patients aged between 4 and 16 made use of the software platform with the following data sets being collected on a 24/7 basis:
- Physiological profiles (e.g. seizure incidence/type and sleeping patterns)
- Psychological wellbeing and general quality of life via validated patient-reported outcome measures
- Medication adherence
The continuous nature of data collection allowed the clinicians to have a thorough understanding of the patient experience.
Evaluating feasibility of mHealth for epilepsy patients
Generally, caregivers were fond of the prompts provided via the app as they felt that it helped medication adherence, with some liking the fact that they could record seizures in real time with a great deal of accuracy. Caregivers also made mention of their ability to contact healthcare providers remotely which they valued. Engagement rates for mobile patient-reported outcome measures (mPROs) and the wearable device were 57.1% and 30.8% respectively. The majority of participants were given smartphones so they could use the app and it was acknowledged by some caregivers that the new technology was challenging to understand and they were not sure if they could use it properly. Caregivers also acknowledged that owning new technologies placed them at risk of being victims of crime, and that the wearables were inconvenient for their children (due to their physical or intellectual disabilities). Difficulties posed by high mobile data costs and internet access were also mentioned.
The results of the feasibility study were published in a paper, Demonstrating the feasibility of digital health to support pediatric patients in South Africa.
The work carried out to date highlights the clinical utility of mHealth for epilepsy patients. Informative data sets were collected that facilitated routine care and helped caregivers (and their children) to better understand and manage the disease. However, patient-centric healthcare technology designs are needed as emphasised by the caregivers that were impacted by socioeconomic dilemmas which include: clinical literacy, digital health literacy/digital literacy, crime and internet access.