Effect of providing sudden unexpected death in epilepsy (SUDEP) information to persons with epilepsy (PWE) and their caregivers-Experience from a tertiary care hospital.

Abstract

The primary objective of present study was to observe the effect of providing SUDEP (Sudden Unexpected Death in Epilepsy) information on drug adherence in persons with epilepsy (PWE). We also looked at impact of disclosing SUDEP information on patient's quality of life and mood. This prospective study had a pretest/post-test design. A total of 231 consecutive PWE (>15years) were enrolled. Of these 121 PWE received information about SUDEP in addition to standard epilepsy care. One hundred and ten PWE (control group) received routine standard epilepsy care but did not receive SUDEP information. Follow up assessment was done at 6months. The primary outcome was a change in drug adherence (measured by Modified Morisky Medication Adherence Scale, MMAS) in PWE following disclosure of SUDEP information. After 6months, 116 PWE in the SUDEP information group and 106 in control group were available for follow up. A non-significant higheradherence was observed in the SUDEP information group as compared to the control group (Mean MMAS change 0.51±1.66 vs 0.25±1.26, P value=0.194). No significant change was perceived in patient's anxiety and depression levels or quality of life in either group. The present study suggests that providing information on SUDEP to PWE and their caregivers may increase drug adherence without adverse effect on quality of life or mood. Well-designed studies with high methodological quality arerequired todetermine the precise effect size associated with disclosure of SUDEP information on drug adherence in PWE.