Burden of disease in patients with a history of status epilepticus and their caregivers

Status epilepticus (SE) is a life-threatening neurological emergency with the potential for wide-ranging impact on patients and caregivers. In this study, the burden of disease in patients with a history of SE and their caregivers was assessed. Adult patients as well as caregivers of children, adole...

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Bibliographic Details
Published in:Epilepsy & behavior 2020-11, Vol.112, p.107374-107374, Article 107374
Main Authors: King-Stephens, David, Wheless, James, Krogh, Calvin, Bettles, Matthew, Niemira, Jeff, Stolper, Robert, Benitez, Arturo, Fournier, Martha, Spalding, William, Lu, Mei
Format: Article
Language:English
Subjects:
Adolescent
Adult
Caregivers
Child
Cost of Illness
Cross-Sectional Studies
Economic burden
Emotional burden
Employment
Functional burden
Humans
Quality of Life
Social burden
Status epilepticus
Status Epilepticus - epidemiology
Surveys and Questionnaires
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Summary:Status epilepticus (SE) is a life-threatening neurological emergency with the potential for wide-ranging impact on patients and caregivers. In this study, the burden of disease in patients with a history of SE and their caregivers was assessed. Adult patients as well as caregivers of children, adolescents, and adults who had experienced ≥1 SE event in the past 24 months completed an online survey. Functional, social, emotional, and economic burden in patients and caregivers was assessed. Burden was measured through concept-targeted questionnaires, including the US Centers for Disease Control and Prevention (CDC) Health-Related Quality of Life 4 (HRQoL-4) and the Work Productivity and Activity Impairment (WPAI) instruments. The 198 respondents comprised 49 adult patients, 51 caregivers of children, 47 caregivers of adolescents, and 51 caregivers of adults. Most patients (93.9%) were diagnosed with epilepsy. Patients' daily activities were highly affected, and many respondents reported a substantial long-term physical and mental impact on patients. The mean CDC HRQoL-4 score for unhealthy days per month ranged from 11.1 for caregivers of adults to 16.9 for caregivers of children. WPAI scores demonstrated a substantial impact on the ability of adult patients and all caregivers to work. Among respondents, caregivers of children reported the highest absenteeism from work (20%) and the lowest employment rate (33%). Proportions of caregivers reporting that 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’. Status epilepticus episodes place a high burden on patients and caregivers. Notably, the burden appeared high across a variety of domains. This study highlights that the burden of disease is pronounced and wide-reaching and goes beyond the immediate physical and medical impact of an SE episode. •Data on burden of disease on caregivers of patients with a history of SE are scarce.•This study assessed the burden of disease on caregivers and patients in the USA.•Critical components of the burden of disease are described.•Data presented indicate that SE places a high burden across a variety of domains.•The study highlighted that the burden goes past the immediate impact of an SE event.
ISSN:1525-5050
1525-5069
DOI:10.1016/j.yebeh.2020.107374