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 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.
“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).
The Seizure Cluster Burden of Illness survey was conducted online 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.
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. 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.
Reports of seizure cluster prevalence vary depending on the population evaluated. Seizure clusters are associated with worse seizure control. 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.