New National Epilepsy Survey Reveals Significant Disconnects on Important Issues Among Patients, Caregivers and Healthcare Professionals
- Survey reveals scale of epilepsy's impact on the lives of patients and caregivers - including fear of having a seizure or losing independence
- New tools for people living with epilepsy, created based on key survey findings, now available on www.WebMD.com/EpilepsySurvey, to help facilitate better conversations among patients, caregivers and doctors
- Ride share program with the Epilepsy Foundation is available to the epilepsy community during the month of November to provide transportation support, a key need identified through survey results
PARAMUS, N.J., Nov. 1, 2019 /PRNewswire/ -- A new, national survey of adult epilepsy patients, caregivers and healthcare professionals (HCPs) revealed a wide range of challenges in the management of the disease, which affects more than three million adults in the United States.1 The findings range from significant disconnects that occur in conversations among patients, caregivers and HCPs to revelations about the far-reaching impact of epilepsy. In fact, 75% of patients surveyed agreed that all they can do is accept their condition.
The survey results unveiled today suggest that most patients are not only affected physically, but also face equally severe emotional, social and financial consequences due to epilepsy. According to respondents, epilepsy affects many aspects of daily life such as living independently, driving, holding a steady job and maintaining solid, close relationships.
Half of patients and caregivers surveyed feel that epilepsy is "a burden that will never go away." More than three out of four patients and caregivers struggle to feel "normal," with a constant fear of not knowing when the next seizure will come.
The "Seize the Truth About Epilepsy Perceptions" (STEP) Survey, conducted online by Kantar Health on behalf of SK Life Science, Inc., was fielded to understand the current state of epilepsy in the United States, with the goal of fostering better communication between patients and their care teams. The survey focused on gaining insights into the doctor-patient relationship, showcasing the emotional journey from diagnosis through current treatment, and unearthing obstacles that patients, caregivers and HCPs face in managing the condition.
According to the Centers for Disease Control and Prevention (CDC), 56% of adults with epilepsy – who are taking seizure medicine – still have seizures.2 Uncontrolled seizures can harm overall health, impair quality of life, increase health care costs and lead to early death.3,4
"Overall treatment outcomes for people with epilepsy have remained the same for decades," said Danielle Becker, MD, MS, Penn Neuroscience Center. "It is vital that patients and HCPs have open, honest discussions in order for patients to get the best possible care. These survey findings help shine a spotlight on some of the key communication breakdowns and areas of opportunity we can address, which is important for making the office visit as beneficial as possible."
STEP findings demonstrate significant disconnects in the dialogue between HCPs and patients.4
Nearly half of patients surveyed admitted they do not share their real-life goals with their doctors
Patients revealed they report a much smaller percentage (45%) of their seizures than what both HCPs (73%) and caregivers (83%) believe
The main reason (60%) patients gave for not reporting seizures is they believed the seizures were not serious enough to mention
In addition, while 65% of patients and 63% of caregivers say a seizure event triggered the office visit, only 25% of HCPs believe a visit is triggered by a seizure event
In an effort to increase the dialogue between patients and care teams, SK Life Science, Inc. has created a tool to help guide the patient-HCP conversation, which can be downloaded at www.WebMD.com/EpilepsySurvey.
Driving remains an issue important to patients.4
Patients are fearful of having a seizure in a number of situations – 57% of patients and 61% of caregivers are extremely afraid they (or someone they care for, respectively) will have a seizure while driving
56% of patients feel it is disruptive not to be able to drive. HCPs also understand patients' frustration about not being able to drive (75%), work/go to school (59%) – highlighting one of the real-life goals of patients – to be independent despite living with epilepsy
"This survey is a continuation of our efforts to gain insights into the unique challenges and unmet needs within the epilepsy community – one challenge identified in the survey was driving," said Christopher Martin, Executive Director of Marketing at SK Life Science, Inc. "In support of the entire epilepsy community and in recognition of National Epilepsy Awareness Month, we are thrilled to announce a first-of-its-kind ride share program developed with the Epilepsy Foundation and Uber. During the month of November, SK will help cover the costs of an Uber ride for people with epilepsy."
Through its partnership with SK Life Science, Inc., the Epilepsy Foundation will be offering $20 Uber ride vouchers during the month of November to people with epilepsy and their caregivers. For more information on how to receive a voucher, please visit www.WebMD.com/EpilepsySurvey and click the Uber information box. Users will be asked to complete a short questionnaire, and afterwards, they'll receive a voucher code that can be added directly to their Uber account, where the discount will be applied. Vouchers are available while supplies last.
About the Seize the Truth about Epilepsy Perceptions (STEP) Survey SK Life Science, Inc. engaged Kantar Health to develop and field a 40-minute online survey of 400 adult patients with epilepsy and 201 caregivers of adult epilepsy patients, and a 45-minute online survey of 258 HCPs (including 96 epileptologists, 112 general neurologists and 50 nurse practitioners/physician assistants). The U.S. study was fielded from February 7 to March 27, 2019 and was classified as an exempt study by the Sterling Institutional Review Board.
The sample for this study utilized respondents from the online panel M3, recruited by Rare Patient Voice (RPV), a custom recruiter experienced in identifying hard to reach patients. The panel member details were maintained in the strictest confidence and used for research purposes only. No information that could personally identify the respondent can be released nor can personal information be sought from the panelists or about the panelists without their prior knowledge and consent. The HCPs in this study were contacted through an online HCP panel sourced through Kantar Health.
About Epilepsy Epilepsy is a common neurological disorder characterized by seizures.5 There are approximately 3.4 million people in the United States living with epilepsy and approximately 65 million worldwide.6 The majority of people with epilepsy (60%) have partial-onset seizures, which are located in just one part of the brain.7 People with epilepsy are also at risk for accidents and other health complications including falling, drowning, car accidents, depression and anxiety, and sudden unexpected death in epilepsy (SUDEP).8,9 Despite the availability of many antiepileptic therapies, at least one in three people with epilepsy are not able to control their seizures through treatment.10
About SK Life Science, Inc. SK Life Science, Inc., a subsidiary of SK Biopharmaceuticals, Co., Ltd., is focused on the research, development and commercialization of treatments for disorders of the central nervous system (CNS). Both are part of SK Group, the third largest conglomerate in Korea. SK Life Science, Inc. is based in Paramus, New Jersey.
The company has a pipeline of eight compounds in development for the treatment of CNS disorders including epilepsy, Lennox-Gastaut syndrome and attention deficit hyperactivity disorder, among others. The first product the company is planning to commercialize independently is cenobamate (YKP3089), an investigational compound for the potential treatment of partial-onset seizures in adult patients.