As we honor International Epilepsy Day in 2021, we want to take a moment to review some of what we have learned in partnership with the dedicated team at Boston Medical Center’s Telehealth Epilepsy Care Collaborative. Since 2016, Boston Medical Center has leveraged Activate Care to improve outcomes for vulnerable populations, including children and youth with epilepsy.
This is their story:
- International Epilepsy Day
- What is epilepsy?
- Challenges in caring for individuals with epilepsy
- Boston Medical Center’s Telehealth Epilepsy Care Collaborative
- Health and business impact of multimodal telehealth strategies
International Epilepsy Day
International Epilepsy Day, a joint initiative created by the International Bureau for Epilepsy (IBE) and the International League Against Epilepsy (ILAE), is a global event celebrated annually on the 2nd Monday of February, to promote awareness on epilepsy right around the world. With IBE and ILAE representation in more than 130 countries, this is a powerful opportunity to highlight the problems faced by people with epilepsy, their families and carers, in every region of the world.
While International Epilepsy Day celebrations vary from region to region, with cultural, geographical and climatic circumstances all helping to determine the activities, the common thread is the desire to highlight epilepsy and to bring attention to the need for better awareness and understanding, appropriate legislation, improved diagnosis and treatment services, and increased research in order to better the lives of all those affected by epilepsy.
What is epilepsy?
To have epilepsy is to have a tendency to have recurring seizures. Anyone can have a seizure, if the brain is exposed to a strong enough stimulus. It is not necessarily a life-long diagnosis. And doctors may consider that you no longer have epilepsy if you go without seizures for a long enough time.
Electrical activity is happening in our brain all the time. A seizure happens when there is a sudden burst of intense electrical activity in the brain. This is often referred to as epileptic activity. The epileptic activity causes a temporary disruption to the way the brain normally works, so the brain’s messages become mixed up.
The brain is responsible for all the functions of your body. What happens to you during a seizure will depend on where in your brain the epileptic activity begins, and how widely and quickly it spreads. For this reason, there are many different types of seizure, and each person will experience epilepsy in a way that is unique to them.
Challenges in caring for individuals with epilepsy
Approximately 50 million people in the world have epilepsy, and up to 70% could live seizure free with proper access to care. In the field of pediatric neurology, the number of physicians is 20% below the national demand and there is a need for a reduction in no-shows as they exhaust limited resources and can lead to negative health outcomes.
Children facing health disparities often have a high risk of unrecognized seizures and epilepsy. In a previously released ELGAN (The Extremely Low Gestational Age Newborn) study conducted by Dr. Laurie Douglass of Boston Medical Center, a screening of 900 children at 10 years of age showed that a third had not been previously reported to have epilepsy. Nearly seventy-five percent of those with unrecognized epilepsy, or approximately 225 children, came from low-income and/or single parent families.
“The need to travel to a metropolitan area for a diagnosis or specialty care, like that required by epilepsy, can place an inordinate burden on patients and families, especially patients with disabilities and those of limited means,” said Douglass, who is also an assistant professor of pediatrics and neurology at Boston University School of Medicine. “It’s integral that we diagnose epilepsy early in children, as it’s often accompanied by developmental, cognitive and behavioral comorbidities that affect the developing brain and can result in life-long disability.”
Boston Medical Center’s Telehealth Epilepsy Care Collaborative
In order to address these issues, video-call encounters were implemented into the Division of Pediatric Neurology at Boston Medical Center to improve access to care for patients with epilepsy. This effort started in 2016 and was supported by a three-year, $1.2 million grant from the Health Resources and Services Administration to expand access to high quality care for underserved populations of children and youth with epilepsy and related disorders.
In this program, epilepsy specialists at Boston Medical Center are working with and training physicians from six community health centers employed at a total of 13 clinical sites across the state of Massachusetts. Through these collaborative care relationships, the Telehealth Epilepsy Care Collaborative has successfully supported hundreds of children and youth up to age 24 with epilepsy through Activate Care’s telehealth tools.
The unique, community-based care model of the Telehealth Epilepsy Care Collaborative is improving communication between the medical center, the patient/family, and all the caregivers on the patient’s team, including school nurses, visiting nurses, early intervention professionals, and any other member of their care team.
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Health and business impact of multimodal telehealth strategies
As the Telehealth Epilepsy Care Collaborative team explained in the journal Pediatric Clinics of North America, telehealth tools can improve communication between providers, patients, family members, and community systems involved in complex care management. Telehealth tools can be particularly useful in the context of populations experiencing health care disparities, because telemedicine visits may reduce costs for patients and boost appointment attendance. Teens and youth may also be particularly well served by telehealth because of generational communication preferences.
Additionally, a recent analysis published in the journal Telemedicine and e-Health compared the no-show rates, no-show costs, and revenue loss percentages between the Collaborative’s patients who were scheduled for video-call encounters and epilepsy patients who were scheduled for in-clinic encounters. Billing codes were provided by billing specialists in the BMC Department of Pediatrics and US dollar values were assigned to appointments based on their duration.
Overall, video-call (VC) encounter patients had a 6% no-show rate whereas in-clinic (IC) patients demonstrated a no-show rate of 15%. VC patients showed a revenue loss percentage of 6% where IC patients showed a revenue loss percentage of 14%. IC patients had a significantly higher revenue potential and contributed most to no-show numbers, no-show costs, and revenue loss percentages compared to VC patients. There was statistically significant evidence that the mean number of no-shows for VC patients (0.1081) was 4 times less than that of IC patients (0.4564). There was also statistically significant evidence (p < .0001) that the mean no-show cost for VC patients ($26.27) was 13 times lower than the mean no-show cost for IC patients ($340.30).
Based on these results, video-call encounters appeared to effectively supplement in-clinic encounters by yielding lower no-show numbers, no-show costs, and revenue loss percentages while also maintaining continuity of care for pediatric epilepsy patients. Overall, this implementation was associated with a two-fold decrease in no-show rates and revenue loss percentages in a specialty of medicine that is limited in resources and is experiencing a physician shortage.
It must be noted that video-call encounters cannot completely supplant in-clinic encounters, however they are effective in facilitating more frequent patient-physician encounters without requiring patients and their families to miss school and/or work. The long-term effect of video-call encounter implementation could lead to less travel costs and lost wages for pediatric patients and their families, which would be beneficial especially for patients that fall below the federal poverty line.
As published in Telemedicine and e-Health, ahead of print: http://doi.org/10.1089/tmj.2020.29048.abstracts