Caregiver burden in psychogenic non-epileptic seizures

Objective: Caregiver burden in psychogenic non-epileptic seizures (PNES) is an important but understudied reality. The objective of this exploratory study was to quantify caregiver burden in PNES and to identify the patient and caregiver characteristics associated with it. Methods: PNES patients and their identified caregivers completed surveys about demographic, disease related and psychosocial characteristics during their Epilepsy Monitoring Unit (EMU) admission. Associations were evaluated using the Zarit Caregiver Burden Inventory (ZCBI) score as an independent variable and the patient and caregiver related characteristics as dependent variables. Results: 43 patients and 28 caregivers were recruited. The patients were on average 36 years old, single women, unemployed, with some college education. They suffered from PNES on average for 8 years, having approximately 20 seizures per month, and were previously maintained on >= 2 antiseizure medications. Most caregivers were first degree relatives with a mean age of 43 years, married employed women of higher educational attainment, typically cohabitating with the patients. Caregiver burden was within the mild-moderate range (ZCBI mean score 28). The burden appeared higher in caregivers of male patients. Patient quality of life, depression and medication side effects were associated with that burden. Additionally, caregiver stigma, depression and anxiety emerged as potential contributors. In the multivariate analysis, patient quality of life and caregiver depression stood out as the most robust factors. Conclusion: There is substantial caregiver burden in PNES. It is associated with both the patient and the caregiver psychosocial well-being in a reciprocal relationship.