How far-reaching is the impact of temporal lobe epilepsy surgery on quality of life 10-44 years after the operation?

PURPOSE: This study evaluates long-term post-surgical quality of life (QoL) in temporal lobe epilepsy patients, focusing on determinants of good QoL despite continued seizures and poor QoL despite seizure freedom. It distinguishes between patient-reported QoL sentiment and a broader epilepsy-related QoL score to assess long-term surgical outcomes. METHODS: Eighty-six patients, 10-44 years post-temporal lobe epilepsy surgery, completed the QOLIE-89 and Beck Anxiety Inventory. Two QOLIE-89 measures were analyzed: a total epilepsy-related score (QoL-T) and a patient sentiment score (QoL-PS). Regression analyses assessed epilepsy-related, cognitive, and general living factors, and group differences (seizure free/not seizure free, good vs poor QoL) were tested using Chi-square tests. RESULTS: Participants scored high (60-88/100) on all QOLIE-89 subscales, indicating generally good QoL. Mean scores were 77.4 for QoL-T and 71.9 for QoL-PS. Among seizure-free patients, 88% reported good QoL on QoL-T and 91% on QoL-PS, compared to 55% and 72% among non-seizure-free patients. Seizure freedom, absence of anxiety, and ability to work predicted better QoL-T, while seizure freedom and figural memory predicted QoL-PS. Patients reporting good QoL despite ongoing seizures were more often on disability pension according to QoL-PS, whereas QoL-T indicated equal likelihood of disability pension in this group. CONCLUSION: Many years after surgery, most patients report good QoL. While seizure freedom remains central, factors linked to cognitive compensation and reduced stress, including disability pension, appear increasingly relevant. Changing expectations may also contribute to improved QoL. Overall, patients appear well adapted post-surgery, with a reduced long-term impact of epilepsy and surgery.