Understanding long-term changes in patient identity 15-20 years after surgery for temporal lobe epilepsy

Following epilepsy surgery, patients can experience complex psychosocial changes. We recently described a longer term adjustment and reframing ("meaning-making") process 15-20 years following surgery for temporal lobe epilepsy, which could involve an ongoing sense of being a "different" person for some patients. Here, we quantitatively examine identity at long-term follow-up and how this relates to meaning-making and postoperative seizure outcome.

Eighty-seven participants were included: 39 who underwent anterior temporal lobectomy (ATL) 15-20 years ago (59% female; median age = 49.2 years, interquartile range [IQR] = 10; median follow-up = 18.4 years, IQR = 4.4) and 48 surgically naïve focal epilepsy patients (56% female; median age = 34.5 years, IQR = 19). We captured approach to meaning-making by coding for key narrative features identified in our previous qualitative work. Nonparametric tests and correspondence analysis were then used to explore relationships between a quantitative measure of identity and meaning-making, as well as seizure outcome, mood, and health-related quality of life (HRQOL).

Patients 15-20 years post-ATL demonstrated a shift toward increasing identity commitment and exploration compared to the surgically naïve cohort, with this shift significantly linked to seizure outcome. Examining the relationship between identity and meaning-making also revealed three groups: (1) those who embraced self-change (29%), (2) those who continued to struggle with this process (60.5%), and (3) those who showed minimal engagement (10.5%). Those who "embraced change" were significantly younger at regular seizure onset and demonstrated a trend toward higher HRQOL.

Findings suggest that ATL patients show a more developed identity profile compared to surgically naïve controls; however, the majority still struggled with postoperative identity change at long-term follow-up. Approximately one third of patients demonstrated positive psychological growth following surgery, reflected in the ability to embrace change. Findings highlight the importance of understanding the impact of surgery on patient identity to maximize the psychosocial benefits.