Nationwide Children’s Hospital and SeizureTracker.com — which hosts the largest database of patient-centered seizure and treatment data in the world — have recently introduced a new wearable app for patients with epilepsy and their caregivers.
Called Track It!, the app is important for the epilepsy community as a whole, says Anup D. Patel, MD, attending neurologist in the Epilepsy Center at Nationwide Children’s Hospital.
“The benefits of Track It! are not only that patients and parents are able to better track and help their own children, but also that they are helping others by participating in a shared database used by researchers studying epilepsy across the globe,” says Dr. Patel, who is also an assistant professor of Clinical Pediatrics and Neurology at The Ohio State University College of Medicine. “We know seizure counts are often underestimated, so we started working with The Research Institute’s Research Information Solutions and Innovation department at Nationwide Children’s to come up with a technological solution.”
Nationwide Children’s established a relationship with SeizureTracker.com, whose online platform allows patients with epilepsy to record seizure data, keep logs and share information with caregivers and clinicians. Researchers say understanding the progression of epilepsy on an individual and community level depends on the quality of seizure data reported by patients.
The SeizureTracker.com database will have logged more than 1.5 million events by the end of 2016. The collaboration linked SeizureTracker.com’s commitment to providing clinical and research data with the seizure tracking wearable that Nationwide Children’s wanted to make available for their patients and families.
Track It! is available for the Apple Watch in the Apple Store. Logging a seizure event is as simple as tapping the wearer’s wrist. The app increases access to an extensive seizure diary system for patients and care providers while improving the data quality for research.
“After a diagnosis of epilepsy, my wife and I quickly realized how important it was to collect good data surrounding our son’s seizures,” says Robert Moss, co-founder of SeizureTracker.com. “The ability to share that information with our care providers made a meaningful impact on how our son’s epilepsy was treated. SeizureTracker.com and the new Apple Watch app will make collecting and sharing quality seizure information much easier.”
Nationwide Children’s and SeizureTracker.com have already collaborated on research; an October publication in Epilepsy & Behavior examined the features that patients with epilepsy and their caregivers feel are most important in a wearable tracker.
“The unique part of this technology is how the app, while keeping data confidential and compliant, interfaces with the Seizure Tracker database, which available to researchers,” says Simon Lin, MD, MBA, chief information officer of The Research Institute at Nationwide Children’s. “About 1 in 100 people in the United States have epilepsy, and our goal with this collaborative project is to make a tremendous difference for those studying causes and treatments of seizures, ultimately providing best outcomes for patients everywhere.”
Patel AD, Moss R, Rust SW, Patterson J, Strouse R, Gedela S, Haines J, Lin SM.Patient-centered design criteria for wearable seizure detection devices. Epilepsy Behav. 2016 Nov;64(Pt A):116-121.
Epilepsy is a common neurological condition. Seizure diary reports and patient- or caregiver-reported seizure counts are often inaccurate and underestimated. Many caregivers express stress and anxiety about the patient with epilepsy having seizures when they are not present. Therefore, a need exists for the ability to recognize and/or detect a seizure in the home setting. However, few studies have inquired on detection device features that are important to patients and their caregivers.
A survey instrument utilizing a population of patients and caregivers was created to obtain information on the design criteria most desired for patients with epilepsy in regard to wearable devices.
One thousand one hundred sixty-eight responses were collected. Respondents thought that sensors for muscle signal (61.4%) and heart rate (58.0%) would be most helpful followed by the O2 sensor (41.4%). There was more interest in these three sensor types than for an accelerometer (25.5%). There was very little interest in a microphone (8.9%), galvanic skin response sensor (8.0%), or a barometer (4.9%). Based on a rating scale of 1-5 with 5 being the most important, respondents felt that "detecting all seizures" (4.73) is the most important device feature followed by "text/email alerts" (4.53), "comfort" (4.46), and "battery life" (4.43) as an equally important group of features. Respondents felt that "not knowing device is for seizures" (2.60) and "multiple uses" (2.57) were equally the least important device features. Average ratings differed significantly across age groups for the following features: button, multiuse, not knowing device is for seizures, alarm, style, and text ability. The p-values were all<0.002. Eighty-two point five percent of respondents [95% confidence interval: 80.0%, 84.7%] were willing to pay more than $100 for a wearable seizure detection device, and 42.8% of respondents [95% confidence interval: 39.8%, 45.9%] were willing to pay more than $200.
Our survey results demonstrated that patients and caregivers have design features that are important to them in regard to a wearable seizure detection device. Overall, the ability to detect all seizures rated highest among respondents which continues to be an unmet need in the community with epilepsy in regard to seizure detection. Additional uses for a wearable were not as important. Based on our results, it is important that an alert (via test and/or email) for events be a portion of the system. A reasonable price point appears to be around $200 to $300. An accelerometer was less important to those surveyed when compared with the use of heart rate, oxygen saturation, or muscle twitches/signals. As further products become developed for use in other health arenas, it will be important to consider patient and caregiver desires in order to meet the need and address the gap in devices that currently exist.