The study aimed to identify and evaluate the burden of caring for an adult, adolescent, or child with epilepsy from the caregiver’s perspective, and identify the perception and management of caregiver burden by healthcare providers (HCPs) and the drivers of decision-making in clinical practice.

Unpaid adult caregivers are important stakeholders in epilepsy management, and proper communication between HCPs and caregivers is needed to further enhance patient well-being.

This was a cross-sectional survey of caregivers of patients with epilepsy and HCPs treating patients with epilepsy.

200 caregivers completed the survey, across China, Taiwan (each n=65/200, 32.5%), and Argentina (n=70/200, 35.0%).

Caregivers commonly experienced emotional impacts, such as stress (66.5%), anxiety (58.5%), and depression (45.5%). Caregivers frequently reported impacts relating to work/school productivity, working hours (each 40.0%), or financial stress (24.5%). More than half of the caregivers were not comfortable discussing certain topics with HCPs including sleep (26%), work (22%), and sexual activity (20%).

200 HCPs completed the survey across China, Taiwan (each n=70/200, 35.0%), and Argentina (n=60/200, 30.0%). Most HCPs reported that caregivers discussed issues related to caregiving (93.0%). These included fatigue (85.0%), poor-quality sleep (68.0%), emotional impacts and stress (61.5% each), anxiety (57.0%), worry about the patient’s future prospects (54.0%) [such as health status (56.5%), worsening of the condition (47.0%), seizure frequency (46.0%) and impact on quality of life (46.0%)], and loss of caregiver’s work productivity/career opportunities (50.5%).

Caregivers for patients with epilepsy experience emotional, physical, financial, work-related, and social impacts. Over three-quarters of HCPs reported caregivers sought emotional or moral support. This study identifies gaps in caregiver support and can be a basis of future initiatives to improve needs of caregivers and gaps in family-healthcare provider communication, so that they can partner with HCPs in the care of patient with epilepsy.