Economic Burden on Epilepsy Caregivers Continues to Rise


Caregivers who care for children with frequent seizures experienced the greatest economic deficit, begging the question whether epilepsy interventions should be weighed based on cost/benefit.

Shaun Hussain, MD

Shaun Hussain, MD

Data from a survey of caregivers for persons with epilepsy (PWEs) showed that they were paying more than double the annual health care costs than the US general population, with costs rising even higher for patients who experienced more frequent seizure outbreaks.

When extrapolated to the national population, Shaun A. Hussain, MD, assistant clinical professor of pediatric neurology and director, infantile spasms program at Mattel Children's Hospital and David Geffen School of Medicine at UCLA, and colleagues, observed total annual costs exceeding $62 billion for caregivers of PWE compared to $14 billion for the general population.

Using a combination of validated instruments and questions specifically designed, investigators created and conducted a survey which was given to 500 caregivers of PWEs from May to July 2015. The survey broke down patients with epilepsy into 2 categories: adults versus children, and disease severity (low: 0 seizures in the prior month vs. high: ≥1 seizures in the prior month). Hussain and colleagues also compiled data on self-reported direct and indirect costs. Other factors such as gender, education, annual household income, insurance status, marital status, and relationship to PWEs were recorded.

Caregiver burden was assessed via 6 survey instruments, including the Patient Health Questionnaire-9 (PHQ-9), the Zabit Burden Interview (ZBI), the Bakas Caregiving Outcomes Scale (BCOS), the 12-Item Short Form Survey Instrument version 2 (SF-12v2), and the Work Productivity and Activity Impairment (WPAI) questionnaire. SF-12v2 was designed specifically for this study to assess stress-related comorbidity.

Caregivers were required to give answers on length of time providing care, whether the respondent was paid for providing care, and the number of hours per week of providing care. Using the PHQ-9, investigators were able to assess depression from caregivers on a 0-27 scale, with 0-4 being minimal and 20-27 considered severe. Investigators identified stress-related comorbidities by asking if the caregiver had experienced possible conditions such as anxiety, chronic constipation, depression, and others since they became a caregiver.

Indirect costs were defined as productivity losses, or a dollar-to-dollar proportion of the workweek, assuming the caregiver worked a standard 40- to 50-hour work week. Direct costs were defined as health care utilization of caregivers of PWE, including aspects such as doctor visits, psychiatrist visits, emergency department visits, and hospitalizations for the respondent over the previous 6 months.

READ MORE: Tapping Into Individualized Risk Prediction in Epilepsy Surgery Candidates

The survey revealed that caregivers were providing an average of 11.4 years of care and spent an average of 57.4 hours per week providing that care. Additionally, 80% of the caregivers were female, with an average age of 44.3 years.

Each caregiver spent an average of $1,256 on direct medical costs each quarter, totaling nearly $7,522 each year. National, annual direct cost to epilepsy caregivers was $13.9 billion, compared to just $4.9 billion for the general population. National, annual indirect costs were similar in difference, totaling $48.3 billion to epilepsy caregivers and $9.3 billion to the general population. Those totals result in a $9 and $39 billion difference in annual direct and indirect costs, respectively.

Costs of caregiving exceeded those for the general population and increased significantly with increasing seizure frequency. Annual direct costs for a child with low seizure frequency was $4,344, compared to $10,162 for children with high seizure frequency. Mean indirect costs for a child with low vs high seizure frequency were $20,529 and $40,137 respectively.

Additionally, data showed that 52.8%, 41%, and 30.8% of caregivers experienced anxiety, depression, and insomnia since becoming a caregiver, respectively. Investigators observed a greater correlation between caregivers of children and higher rates of anxiety, headaches/migraines, insomnia, and irritable bowel syndrome than caregivers of adults (P <.05 for all).

“This is the first study to obtain standardized, comprehensive, epilepsy-specific clinical and cost estimates of caregiving. The magnitude of the preliminary estimates suggests the importance of considering this component when understanding the full consequences of the burden of epilepsy,” the study authors noted.

“The magnitude of the preliminary estimates suggests the importance of considering this component when understanding the full consequences of the burden of epilepsy. Identification of subgroups that face the highest economic burden can better allow researchers to target interventions for populations who could benefit the most,” the investigators concluded. “Although more research into this important topic would be beneficial, these preliminary findings could allow policymakers to better weigh the costs and benefits of interventions reducing the burden of epilepsy and to allocate resources more efficiently.”


Hussain S, Ortendahl JD, Bentley TG, et al. The economic burden of caregiving in epilepsy: an estimate based on a survey of US caregivers. Epilepsia. Published online: January 17, 2020. doi: 10.1111/epi.16429.

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