Abstracts

Rationale: Though the negative impact of epilepsy on patient well-being and quality of life is well known, less is known about the impact of seizure clusters (SC). To further characterize the burden of SC on patients and caregivers, a large survey was conducted.Methods: The SC Burden of Illness US survey was conducted online by Harris Poll on behalf of The Epilepsy Foundation (unrestricted grant support from Upsher-Smith Laboratories) in September 2014. Over 800 participants (clinicians, caregivers, and patients) were surveyed. The full survey was designed to allow for abundant data collection across a wide range of topic areas, including demographics, prior experiences, and approach to clinical practice. The survey data presented here focus on questions evaluating burden of SC on quality of life, including emotional well-being, functionality, and productivity. Patients participating in the survey had been diagnosed with epilepsy or seizure disorder and had experienced SC in the past year (defined as ≥2 seizures within 24 h that were outside their typical seizure pattern). Caregivers provided care for a patient with SC (adult or child) who was a friend, family member, or loved one. Clinicians were neurologists and epileptologists, who treated adult or pediatric patients. Raw data were weighted as needed to achieve representativeness within the respective respondent populations.Results: Of 861 respondents, 259 were adult SC patients (age ≥18 years), 263 were caregivers (of children [35%] or adults [65%]), and 339 were clinicians (neurologists, n=178; epileptologists, n=161) treating children (41%) or adults (59%). A total of 53% of patients and 52% of caregivers reported experiencing or providing care for an SC within the past month. IMPACT ON PATIENTS: Most patients and caregivers (70% and 66%, respectively) felt that SC have a major/moderate negative impact on patient quality of life, particularly affecting the ability to drive (69%, 80%), mood (69%, 72%), job/ability to work (69%, 70%), independence (67%, 72%), and social activities/hobbies (57%, 57%). A majority of patients and caregivers (74% and 55%) felt that SC add significant financial burden to the patient’s life. Patients reported that SC made them feel exhausted (76%), confused/slow thinking (70%), stressed (63%), depressed (62%), helpless (56%), and scared (51%). IMPACT ON CAREGIVERS: Overall, 58% of caregivers said that SC have a major/moderate negative impact on their own quality of life, with 49% reducing work hours or taking days off and 43% stopping work altogether for a period of time. Caregivers felt stressed (67%), helpless (64%), scared (59%), and overwhelmed (52%) when the patient experienced SC.Conclusions: The burden of SC on patient and caregiver quality of life includes emotional, financial, and social components. These data suggest the need for increased education on managing SC and improved rescue therapies to potentially reduce burden of illness. Support: Upsher-Smith Laboratories, Inc.