Survey Reveals Burden Of Seizure Clusters On Children With Epilepsy And Their Caregivers
Findings Presented at 44th Annual Meeting of the Child Neurology Society
NATIONAL HARBOR, Md., Oct. 9, 2015 /PRNewswire/ -- Seizure clusters, a seizure pattern experienced by some patients with epilepsy, can have a profound impact on pediatric patients and their caregivers' quality of life, according to a recent survey conducted online in September 2014 by Harris Poll. The U.S. survey revealed that most caregivers (61 percent) and clinicians (80 percent) of children who experience seizure clusters felt that seizure clusters had a major/moderate negative impact on the child's quality of life, and more than half of caregivers (58 percent) reported the same impact on their own quality of life. Harris Poll conducted the survey on behalf of The Epilepsy Foundation with support by an unrestricted grant from Upsher-Smith Laboratories, Inc. (Upsher-Smith). Findings were presented at the 44th Annual Meeting of the Child Neurology Society in National Harbor, MD, October 7-10, 2015.
The Seizure Cluster Burden of Illness survey development was led by a steering committee comprised of renowned leaders in the field of epilepsy including: Janice Buelow, RN, PhD, FAAN, vice president, programs and research, Epilepsy Foundation; Patricia Penovich, MD, Minnesota Epilepsy Group; Joseph Sirven, MD, chairman, Department of Neurology, Mayo Clinic; and James Wheless, MD, professor and chair, Department of Pediatric Neurology, University of Tennessee.
"This is the first time that such an in-depth survey highlighting the seizure cluster burden of illness has ever been conducted," said James Wheless, M.D., Professor and Chief, Department of Pediatric Neurology, University of Tennessee Health Science Center. "These findings offer a glimpse into the daily challenges faced by pediatric seizure cluster patients and their caregivers and will hopefully lead to improved education and new, advanced treatments."
The data from the survey show that seizure clusters have a substantial impact on emotional well-being for children and caregivers, with both clinicians and caregivers reporting that seizure clusters made the child feel scared, stressed and helpless. The data also demonstrated a substantial impact on daily living, with those surveyed reporting a reduced ability to attend school (children) and work (caregivers).
Methodology
The Seizure Cluster Burden of Illness survey was conducted online in the United States by Harris Poll on behalf of the Epilepsy Foundation from September 2-30, 2014, among 861 adults ages 18 and older. Respondents in the subset analyses pertaining to children, ages 0-17, included 103 caregivers of children and 139 pediatric clinicians: neurologists (n=78) and epileptologists (n=61). Raw data were weighted as needed to achieve representativeness within the respective respondent populations. This online survey is not based on a probability sample and therefore no estimate of theoretical sampling error can be calculated. For complete survey methodology, including weighting variables, please contact Andrea Preston at Kovak-Likly Communications at 203-762-8833, [email protected].
About Epilepsy
Epilepsy is a medical condition that is characterized by recurrent seizures. More than two million people in the U.S. are estimated to be affected by epilepsy, with about 150,000 new cases of epilepsy diagnosed each year.1 Epilepsy can be associated with profound physical, psychological and social consequences that negatively impact people's lives.
About Seizure Clusters
Seizure clusters, also referred to as acute repetitive seizures, seizure flurries, crescendo seizures, cluster seizures, or bouts of increased seizure activity, consist of multiple seizures which occur over a relatively brief period of time with a pattern distinguishable from the patient's usual seizure pattern.2
Reports of seizure cluster prevalence vary depending on the population evaluated. Seizure clusters are associated with worse seizure control.3 In a study conducted in a tertiary epilepsy center in patients with a broad range of seizure control, the prevalence of seizure clusters was close to 30%.3 The number of epilepsy patients in the United States who experience seizure clusters is approximately 152,000.4,5,6,7
About the Epilepsy Foundation
The Epilepsy Foundation, a national non-profit with 48 affiliated organizations throughout the United States, has led the fight against seizures since 1968. The Foundation is an unwavering ally for individuals and families impacted by epilepsy and seizures. The mission of the Epilepsy Foundation is to stop seizures and sudden unexpected death in epilepsy (SUDEP), find a cure and overcome the challenges created by epilepsy through efforts including education, advocacy and research to accelerate ideas into therapies. The Foundation works to ensure that people with seizures have the opportunity to live their lives to their fullest potential. For additional information, please visit www.epilepsy.com.
About Upsher-Smith
Upsher-Smith Laboratories, Inc., founded in 1919, is a growing, fully integrated pharmaceutical company dedicated to its mission of delivering high-value, high-quality therapies and solutions which measurably improve individuals' lives. As a family-owned pharmaceutical company, we are able to adapt and thrive in a dynamic healthcare environment. Our world is constantly evolving, and we are continually adapting to the ever-changing needs of patients, physicians, pharmacists, and healthcare organizations. Where there is a need, we will work to deliver solutions that simplify access to treatment, deliver better health outcomes, and enhance life. Upsher-Smith has a particular focus on developing therapies for people living with central nervous system (CNS) conditions, such as seizure disorders. For more information, visit www.upsher-smith.com.
References
1. Epilepsy.com. Available at: http://www.epilepsy.com/learn/epilepsy-statistics. Accessed September 21, 2015.
2. Dreifuss FE, Rosman NP, Cloyd JC, et al. A comparison of rectal diazepam gel and placebo for acute repetitive seizures. N Engl J Med. 1998;338:1869-75.
3. Haut SR, Shinnar S, and Moshe SL. Seizure Clustering: Risks and Outcomes. Epilepsia. 2005;46(1):146-149.
4. Kobau R, Zahran H, Thurman DJ, et al. Epilepsy Surveillance Among Adults – 19 States, Behavioral Risk Factor Surveillance System, 2005. MMWR. 2008;57:SS-6.
5. Kwan P, Brodie MJ. Early Identification of Refractory Epilepsy. N Engl J Med. 2000;342:314-319.
6. Berg AT, Vickrey BG, Testa FM, et al. How long does it take for epilepsy to become intractable? A prospective investigation. Annals of Neurology. 2006;60:73-79.
7. Haut SR, Lipton RB, LeValley AJ, et al. Identifying seizure clusters in patients with epilepsy. Neurology. 2005 October 25;65(8):1313-1315.
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