The impact of COVID-19 on people with epilepsy is not over, a longitudinal study

Background: Despite the shift of the COVID-19 era, the post-pandemic impacts on healthcare for people with epilepsy (PWE) remain unknown. This study aimed to determine the clinical, logistic, and psychological impacts of the COVID-19 pandemic during and after COVID-19 containment measures. Method: This is a longitudinal study over two years. Clinical and psychological outcomes of COVID-19 were assessed with the Hospital Anxiety Depression Scale (HADS) and Quality of Life in Epilepsy Inventory (QOLIE-31). Result: A total of 239 patients were recruited, with a mean age of 38.32±14.16 years, and 51.5% were male. Seventy-nine (33.1%) were previously infected with COVID-19. As compared to during the COVID-19 pandemic, the percentage of patients who reported seizure worsening (13.0%) remained the same after the pandemic. The main reasons associated with seizure worsening include baseline seizure frequency ≥1 per month (54.8%), stress (61.3%) and fatigue (48.4%), despite more accessible clinic appointments (49.4%), medication supply (67.8%) and emergency units (62.8%). Psychologically, after the COVID-19 pandemic, PWE reported similar anxiety (4.65±4.46 vs. 4.78±3.72, p=0.715) and depression scores (3.81±3.97 vs. 3.86±3.52, p=0.869) than during the pandemic. Despite improvement in clinical and logistics factors, PWE experiences worsening in quality of life (57.44±15.41 vs. 61.70±15.05, p=<.001), especially in the emotional well-being, cognitive, medication effects, and social function subscales. Conclusion: Despite the improvement in clinical and medication access in the post-COVID-19 era, the challenges and consequences of the pandemic remained, without an improvement in seizure control and psychological well-being, and worsening quality of life.