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Lived Experience of Epilepsy: Patient and Caregiver Perspectives (LEEP)

Adults with epilepsy have poorer health status and higher symptom burden than their peers without epilepsy. This is especially true for those with comorbidities associated with epilepsy and/or TBI, such as depression.

Our understanding of the reasons for these differences is still emerging. One area that has been particularly poorly studied is that of the role of caregivers in the health of adults with epilepsy, and the impact caring for someone with epilepsy has on the caregivers themselves. There is strong evidence from other populations that having a caregiver improves health, self-care, and quality of life for people with a range of health conditions. However, no systematic studies have been done to corroborate this in adults with epilepsy.

Moreover, isolation associated with COVID-19 may impact both adults with epilepsy and caregivers of individuals with epilepsy. Isolation can have an effect on access to care, mental health symptoms, stress, and well-being.

The purpose of this study is to obtain descriptive information on the health status of adults with epilepsy and caregivers of adults with epilepsy. We will examine variation in health outcomes for individuals with epilepsy based on TBI status (severity of worst TBI) and COVID exposure and COVID impact (e.g., isolation). These data will be used as preliminary data for future grant applications.