Identifying the trajectory of social milestones 15-20 years after epilepsy surgery: Realistic timelines for postsurgical expectations

Objective: Patients often undertake epilepsy surgery with the expectation that it will lead to improvements in their social situation. Short- to medium-term research consistently points toward improvements in social outcomes; however, no study has mapped out postsurgical social timelines, particularly for longer-term (>15 years) outcomes. Methods: We recruited 39 patients who had undergone anterior temporal lobectomy (ATL) for drug-resistant temporal lobe epilepsy (TLE) between 1994 and 2002. The cohort (24 females) had a median age of 49 years (range 38-67), age of habitual seizure onset was 9.5 years (range 0.5-29 years), and age at surgery was 31 years (range 20-53). Patients were followed up for a median of 18.4 years postsurgery (IQR = 4.4). Using data obtained from semistructured interviews, we conducted a comprehensive qualitative analysis of patients' self-reported postsurgical social trajectories. Self-report questionnaires were used to assess mood and health-related quality of life (HRQOL) at the time of interview. Results: There was a common sequence of social milestone achievement, spanning 20 years postsurgery. Typically, patients first (re)gained their license, then attempted educational and vocational gains, followed by establishing long-term relationships and finally a family unit. Rare, intermittent seizures postsurgery did not appear to have detrimental effects on social trajectories. Those who experienced a reduction in seizures showed increased likelihood of attaining social milestones compared to those with ongoing seizures. Significance: Achieving social milestones after epilepsy surgery may take considerably longer than patients are expecting prior to surgery. The pattern of social milestone outcome resembled a process of psychosocial development. These findings have important implications for presurgical counseling and postsurgical rehabilitation.