Comparative retrospective analysis: exploring the quality of life of people with epilepsy in two cohorts

People with epilepsy (PWE) are reported to have a lower quality of life (QOL). QOL among PWE were primarily observed through cross-sectional studies, and there is little information about the progression of QOL among PWE over the years. This study aimed to investigate the changes in QOL among PWE at a tertiary referral centre. A retrospective observational study was conducted among PWE from the Neurology clinic at the University Malaya Medical Centre. Data were extracted from the Quality of Life in Epilepsy Inventory (QOLIE-31) database for 2016, 2017, and 2020. A total of 88 subjects were included in Cohort 1 (2016 vs. 2017) and Cohort 2 (2017 vs. 2020), respectively. There was a significant improvement in mean scores of QOLIE-31 in Cohort 1 (57.7±12.2 vs. 63.2±14.2; p<0.001), in terms of seizure worry, emotional well-being, cognitive functioning, medication effects and social function (p<0.05, respectively). However, significant deterioration was observed in Cohort 2 (67.1±15.6 vs. 63.1±14.9; p=0.008), in terms of seizure worry and cognitive functioning (p<0.05, respectively). Based on the calculated Jacobson Reliable Change Index (RCI) for the QOLIE-31 score, 28.4% from Cohort 2 experienced deterioration of QOL as compared to those from Cohort 1 (8%) (p<0.001), which was most likely attributed to the COVID-19 pandemic. This study provides insights into the change of QOL among PWE in Malaysia over time, encompassing the COVID-19 pandemic period.