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

Abstract

Objective: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. Methods: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, SUPPORTINGINFORMATIONAdditional supporting information may be found online in the Supporting Information section.

Impact of epilepsy surgery on quality of life: Systematic review and meta‐analysis

“…Additionally, patients may go through a process of identity change that mostly results in foreclosed identity with reduced exploration and inability to embrace the change in the long term. 50 For example, several studies have found that attaining Engel class I (the overarching "seizure freedom" class encompassing several seizure states) is associated with a worsening QoL; this is not true, however, for those who attain the subclass Engel 1a ("completely seizure free since surgery"). 41,51,52 This decline in QoL for the broad Engel class I may be underpinned by confounding factors such as failure to attain patients' expectations before surgery, including hoping to be "cured" and stop ASMs, 53 and the need to change ASM number or dosage, with the corresponding ASM side effects.…”

“…" 49 The latter describes the transition from living with a chronic illness to living in a state of wellness, and the accompanying feelings of anxiety, guilt, and burden of increased expectations to take up the roles and responsibilities of healthy individuals that may temporarily reduce QoL. Additionally, patients may go through a process of identity change that mostly results in foreclosed identity with reduced exploration and inability to embrace the change in the long term 50 . For example, several studies have found that attaining Engel class I (the overarching "seizure freedom" class encompassing several seizure states) is associated with a worsening QoL; this is not true, however, for those who attain the subclass Engel 1a ("completely seizure free since surgery") 41,51,52 .…”