Epilepsy Blog Relay: Patient-Provider Disconnects In Epilepsy: National Survey Evaluates Perceptions

The “Seize the Truth About Epilepsy Perceptions” (STEP) Survey, conducted online by Kantar Health on behalf of SK Life Science, Inc., was focused on adult patients with epilepsy to understand the current state of epilepsy in the U.S., with the ultimate goal of fostering better communication between patients and their care teams.[1]

The survey results revealed important disconnects that must be addressed in order for open, honest discussions to take place between patients, caregivers and healthcare providers (HCPs). The survey showed that epilepsy affects many aspects of daily life such as living independently, driving, holding a steady job, and maintaining solid/close relationships.

Although there are several areas that comprise the epilepsy journey, epilepsy also has an emotional effect on patients and caregivers. Approximately 80% of patient and caregiver respondents said they feel some form of isolation due to epilepsy. After all, epilepsy has a much greater impact on a person than the physical symptoms alone.

In fact, half of patients and caregivers surveyed feel that epilepsy is “a burden that will never go away.” More than 3 out of 4 patients and caregivers struggle to feel “normal,” with a constant fear of not knowing when the next seizure will come.

 In highlighting significant disconnects that occur in conversations among these groups, the STEP Survey has helped draw attention to key areas we can address to ensure patients receive the best possible care. Take a look at the infographic below to learn more about the insights. For more information about the STEP Survey, please visit www.WebMD.com/EpilepsySurvey.

[1] SK Life Science, Inc. and Kantar Health. “Seize the Truth about Epilepsy Perceptions (STEP) Survey.” February 7, 2019 to March 27, 2019.

Jessica K. Smith Founder and CEO; Executive Director

Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world.

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