Abstracts

Rationale: Status epilepticus (SE) is a severe neurological condition with a risk of long-term physical and cognitive impairments- as well as death- and the potential for wide-ranging impacts on patients and caregivers. This study aimed to assess the humanistic burden of SE on patients and caregivers in the USA. Methods: Adult patients (>=18 years old) and primary caregivers of children (6 months-11 years old), adolescents (12-17 years old) and adults (>=18 years old) who had all experienced >=1 SE event in the past 24 months completed an online survey. We assessed caregiver and patient demographics, as well as daily patient and caregiver burden across four major domains (functional, economic, emotional, and social). Burden was measured through a wide variety of questions, including two patient-reported instruments - the Center for Disease Control and Prevention Health-Related Quality of Life 4 (CDC HRQOL4) score, assessing physical and mental health - and the Work Productivity and Activity Impairment instrument (WPAI).  Results: The 198 respondents comprised 49 adult patients, 51 caregivers of children, 47 caregivers of adolescents, and 51 caregivers of adults. Respondents were predominately female (59.2%, 92.2%, 89.4% and 76.5% for adult patients, caregivers of children, caregivers of adolescents and caregivers of adults, respectively). The proportion of caregivers being parents/guardians ranged from 51% for caregivers of adults to 95.7% for caregivers of children.Patient’s daily activities were highly affected by SE, with many respondents reporting a substantial long-term physical and mental impact of SE on patients (Figure). The mean CDC HRQOL4 score ranged from 11.1 unhealthy days per month for caregivers of adult to 16.9 for caregivers of children.The WPAI PRO demonstrated a substantial impact of SE on the ability of adult patients and/or caregivers to work. Caregivers of children reported the highest mean absenteeism at work (20%) and the lowest employment rate (33%). Adult patients reported the second highest mean absenteeism (16%).The proportion of caregivers reporting their daily social life was impacted at least “some of the time” ranged from 80% to 92%, with nearly half (47%) of caregivers of children responding that their social life was impacted “all the time.” Both caregivers and patients described experiencing constant daily anxiety related to the fear of the next SE event or death. Conclusions: SE places a high humanistic burden on patients and caregivers, particularly affecting caregivers of children. Notably, burden appeared high across a variety of domains. This included high chronic emotional and social burden on patients and caregivers. This study highlighted that SE burden is both impactful and wide-reaching and goes beyond the immediate physical impact of a SE episode. Funding: Study funded by Shire Development LLC, a Takeda company.