The Trajectory of Quality of Life in Newly Diagnosed vs Chronic Refractory Focal Epilepsy

Background and Objectives Seizures negatively affect quality of life (QoL), but the impact of seizure control and mental health on QoL over time is not well described. The aim of this study was to investigate how these factors influence the longitudinal trajectory of QoL in patients with focal epilepsy. Methods Data from the Human Epilepsy Project (HEP) 1 and 2 studies—prospective, multicenter, longitudinal studies of focal epilepsy—were analyzed for this study. HEP-1 included patients with newly diagnosed focal epilepsy, and HEP-2 included those with treatment-resistant focal epilepsy. Mood and anxiety disorders were assessed using the Mini International Neuropsychiatric Interview, and QoL was measured using the QOLIE-10-P questionnaire. For this study, the QOLIE-10-P was scaled to 0–100 (higher score = better QoL). QoL was evaluated approximately every 6 months over 18 months. Data analysis used a linear mixed-effects model to assess the longitudinal trend of QoL. Results Of 410 participants, 251 (61.2%) were women and 133 (28.5%) had refractory seizures, with a median (interquartile range) age of 37.00 (29.00–47.00) years. The refractory seizure group had significantly worse longitudinal QoL compared with the newly diagnosed seizure-free group (−12.87; 95% CI −15.78 to −9.95; p < 0.001) and the newly diagnosed seizure-persistent group (−11.02; 95% CI −16.02 to −6.03; p < 0.001). The presence of any mood or anxiety disorder was associated with lower QoL (−15.85, 95% CI: −18.75 to −12.96; p < 0.001) compared with no mood or anxiety disorder, with participants with mixed depression and anxiety having relatively worse longitudinal QoL (vs any mood or anxiety disorder: −23.07; 95% CI: −31.31 to −14.83; p < 0.001). Overall, the newly diagnosed seizure-free participants had improving QoL over time by 0.45 points per month (95% CI: 0.32, 0.58). By contrast, participants with chronic refractory seizures had a minimal change in QoL over time. The rate of QoL improvement in newly diagnosed participants was significantly greater than in those with refractory seizure by 0.45 points per month (95% CI: 0.23–0.66, p < 0.001). Discussion Over time, seizure control drives QoL trajectories among people with newly diagnosed and refractory epilepsy. While psychiatric comorbidities generally lead to lower but stable QoL, a more complex psychiatric profile is associated with gradual QoL decline.