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.