PHILADELPHIA—Patients with seizure clusters and clinicians characterize seizure cluster management differently, which suggests that patients may not implement certain clinical recommendations, according to results from a survey presented at the 69th Annual Meeting of the American Epilepsy Society. In addition, patients and caregivers tended to perceive the impact of seizure clusters more negatively than clinicians did.
The Seizure Cluster Burden of Illness survey measured the physical and emotional impact of seizure clusters, prior experiences, and approach to clinical practice. More than 850 patients, caregivers, and physicians participated in the nationwide survey, which was conducted online in September 2014. A total of 259 adult patients, 263 caregivers, and 339 neurologists/epileptologists completed the survey. Harris Poll conducted the survey on behalf of The Epilepsy Foundation with unrestricted grant support from Upsher-Smith Laboratories.
“These survey results clearly highlight the perception disparities between clinicians and those living with seizure clusters,” said Joseph Sirven, MD, Chairman of the Department of Neurology at Mayo Clinic and a member of the steering committee that developed the survey. “A majority of physicians (79%) reported that they recommend patients use a rescue medication when a seizure cluster occurs, while only a minority of patients (20%) reported typically doing so. This disconnect points to the need for identifying areas that require more attention during physician–patient interactions so that potential excessive costs of care due to the overutilization of ER services and underutilization of rescue treatments are avoided.”
The majority of patients (70%) felt that seizure clusters have a major/moderate negative impact on their quality of life, affecting their ability to drive, mood, independence, and social activities and hobbies. Patients reported that seizure clusters made them feel exhausted (76%), confused or slow-thinking (70%), stressed (63%), depressed (62%), helpless (56%), and scared (51%). More than half of caregivers (58%) reported that seizure clusters have a major/moderate impact on their own quality of life and nearly half (48%) said their work has been negatively impacted by their patient’s seizure clusters.
Nearly half of patients (47%) and caregivers (48%) strongly agreed that the seizure disorder prevents the patient from doing things other people can do, compared with 23% of clinicians. In addition, only about half of patients and caregivers felt that patients with seizure clusters can achieve a fulfilling life. Nearly three-quarters of clinicians, however, felt that a fulfilling life was possible for patients. More patients than clinicians strongly agreed that seizure clusters get in the way of daily living activities (32% vs 14%), and increased emotional burden (43% vs 29%) and financial burden (42% vs 15%).
When asked what are typical recommendations when a seizure cluster occurs, clinicians most commonly recommended using a rescue medication (79%) followed by calling the doctor’s office (67%), visiting the emergency room (61%), and staying calm (50%). Patient actions, however, were to stay calm (34%), do nothing (27%), visit the emergency room (24%), call the doctor (20%), and take a rescue medication (20%).