Telemedicine, with the ubiquity of high-speed internet, has helped people with epilepsy overcome their dependence on caregivers and public assistance and take charge of their health care from the comforts of their home, wherever that may be.
Vineet Punia, MD
On a recent afternoon, a physician in the Epilepsy Center was scheduled to see Josh, a young and bright college senior from Kentucky, for his first follow-up visit after epilepsy surgery. As expected, just a minute before 2 pm, the screen on the cell phone lit up and declared that a patient had entered the Cleveland Clinic Express Care Online waiting room.
The treating physician logged into the Express Care Online system and saw the familiar, smiling face of Josh. He was sitting in the passenger seat, going for a round of golf with his father. He immediately exclaimed, “Doctor, I am seizure free!” Those words are always music to the ears of any physician treating patients with medically intractable epilepsy. But this story is not about the treating physician, the success of epilepsy surgery, or Josh. It is about the hundreds of patients like him and the changing face of health care delivery impacting epilepsy care in the digital age.
About 3.4 million people, or 1.2% of the US population, suffers from epilepsy.1
The most unnerving aspect of epilepsy as a condition is the unpredictable nature of when a seizure may occur. This uncertainty leads to several restrictions in the lives of people with epilepsy (PWE), which profoundly impacts their quality of life. The loss of driving privileges is the biggest concern among the majority of PWE,2
because this leaves patients dependent on a loved one or potentially scarce public transport for their travel needs and to get the health care they require. Telemedicine, with the ubiquity of high-speed internet, has helped PWE overcome this dependence and take charge of their health care from the comforts of their living room—or, as in Josh’s case, from their car seat. PWE stand to gain a lot from the digital house calls that telemedicine provides.
All of us desire the best health care for ourselves and our loved ones. However, getting the best care, at times, may mean traveling hundreds of miles outside of our home states. Although a single, long-distance trip to see an expert may not be a big hurdle, continuing care for a chronic disease like epilepsy may not be possible for everyone. This is where tele-epilepsy enters the picture, by dissolving the physical distance that separates a care provider and PWE.
After an initial evaluation in our clinics, tele-epilepsy allows us to continue taking care of PWE located all over the country. The use of telemedicine for the care of PWE means that their friends or relatives do not have to take a day off work to bring them to the clinic. Similarly, for PWE, it means that they can see a care provider right from their desk at their job, college, or university; the comfort of their home; or even from their resort or hotel room. It may also potentially provide PWE an opportunity to be seen by health care providers during nontraditional office hours, as these virtual visits can be scheduled by the provider outside of work hours from home.
Imad Najm, MD
Unfortunately, one-third of PWE do not respond to medications; they suffer from drug-resistant epilepsy. These are the sickest of our patients and require care at specialized epilepsy centers—level 3 and 4 per the National Association of Epilepsy Centers3
—that provide medical, neuropsychological, psychosocial, and neurodiagnostic monitoring services, including surgical options, to treat their epilepsy.
There are many level 3 and 4 epilepsy centers in the United States, but there are large areas of health professional shortages as well. Many patients live in rural areas and have scant health care providers, particularly for the specialized care required to manage drug-resistant epilepsy. Tele-epilepsy provides a novel means of consistent outreach to these patients. We have been using tele-epilepsy virtual visits at Cleveland Clinic Epilepsy Center for more than 2 years. More than 1500 patients have been seen via tele-epilepsy in 2018. More than 68% of virtual visit patients are satisfied with their ability to get an appointment when desired, and more than 72% are satisfied with the ease of scheduling their appointments.
America is an aging country, and for the first time in history, 1 in every 5 residents will be 65 and older by 2030.4
To the surprise of many, this aging population is at the highest risk for the devel- opment of new-onset epilepsy.5
Therefore, it is not difficult to imagine the potential for a much sharper increase in the incidence of epilepsy in the future, especially in those who are most vulnerable, older, and frail. Many elderly patients live in assisted living or nursing homes and require prearranged, specialized, and expensive transportation services that include an accompanying caregiver to come for their outpatient clinic visits. Children and adults suffering from debilitating brain diseases that lead to epilepsy also require such transport. Telemedicine has the potential to simplify their care needs for epilepsy by reversing the current model— taking us into their lives, not having them take an onerous journey to our clinics.
Such changes to health care delivery for PWE could help lower health care costs as well. The greater use of telemedicine would help free up physical space in clinics, which could be reutilized for other purposes, and reduce the burden on the assisting staff in the clinics.
Previous research has shown that the adherence rate with telemedicine-based health care visits is very high among PWE, and in a pilot study, a no-show rate of only 11% was noted.6
Parents of children with epilepsy have reported a high degree of satisfaction with care provided through telemedicine as well.7
Future research will help us discover if there is a continued level of satisfaction with telemedicine on subsequent visits for PWE, identify situations where it may be more appropriate to see PWE in clinics, and identify PWE who will be the best candidates for prolonged continuity of care through telemedicine.
In addition to the use of tele-epilepsy to care electively for PWE, the Cleveland Clinic Epilepsy Center has been using centralized continuous distant monitoring of patients admitted to the epilepsy monitoring units for presurgical or diagnostic evaluations. We have been using the centralized monitoring unit concept effectively since 2010 for both pediatric and adult patients in our epilepsy, for patients undergoing bedside electroencephalography (EEG) monitoring on the hospital floors, and for patients in intensive care unit (ICU) settings within the same hospital or at other Cleveland Clinic Health System hospitals in Ohio, Florida, and Abu Dhabi. This 24/7 approach yields many advantages, including better seizure detection, earlier detection, and timely reporting of changes in the EEG to the treating teams in the ICU or the inpatient settings. The future use of artificial intelligence for the live detection of EEG changes and seizures will undoubtedly take this concept to the next level and will enable the care of these patients anywhere they may be.
Although there are several advantages to using telemedicine in epilepsy treatment, there are some limitations as well. Unlike telemedicine for emergency conditions such as stroke, the current model of care delivery in epilepsy is an elective, prescheduled, and visit-based model. It is not currently available for such emergencies as an ongoing seizure at home, which have become detectable with the more widespread use of wearable monitoring devices.
Also, whereas telemedicine’s use for individuals who’ve had a stroke has led to the establishment of the hub and spoke model, in which an anchor establishment (hub) offers a full array of services, complemented by secondary establishments (spokes) that offer more limited services, and the “drip- and-ship” model of care in which a stroke neurologist at a tertiary center is able to evaluate a patient in the emergency department of a community hospital,8
there is no such model for treatment of epileptic emergencies, like status epilepticus.
Future advancements and adoption of various applications of telemedicine may help us overcome these limitations as well result in high level care for PWE anytime and anywhere.
1. Epilepsy data and statistics. CDC wesbite. cdc.gov/epilepsy/data/index.html. Accessed March 1, 2019.
2. Gilliam F, Kuzniecky R, Faught E, BlackL, Carpenter G, Schrodt T. Patient‐validated content of epilepsy‐specific quality‐of‐life measurement. Epilepsia.
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3. What is an Epilepsy Center? National Association of Epilepsy Centers website. naec-epilepsy. org/about-epilepsy-centers/what-is-an-epilepsy-center. Accessed March 1, 2019.
4. Older people projected to outnumber children for first time in U.S. history [press release]. Suitland, MD: US Census Bureau; September 6, 2018. census.gov/newsroom/press-re- leases/2018/cb18-41-population-projections.html. Accessed March 1, 2019.
5. Sillanpaa M, Gissler M, Schmidt D. Efforts in epilepsy prevention in the last 40 years: lessons from a large nationwide study. JAMA Neurol.
2016;73(4):390-395. doi: 10.1001/ jamaneurol.2015.4515.
6. Haddad N, Grant I, Eswaran H. Telemedicine for patients with epilepsy: a pilot experience. Epilepsy Behav.
2015;44:1-4. doi: 10.1016/j.yebeh.2014.11.033.
7. Joshi CN. Telemedicine in Pediatric Epilepsy: Is it Practical? Presented at: 42nd Annual Meeting of the Child Neurology Society; October 30-November 2, 2013; Austin, TX. Abstract 75. mattshirley.com/uploads/2014/04/ana24069.pdf. Accessed March 2, 2019.
8. Saler M, Switzer JA, Hess DC. Use of telemedicine and helicopter transport to improve stroke care in remote locations. Curr Treat Options Cardiovasc Med.
2011;13(3):215-224. doi: 10.1007/ s11936-011-0124-y