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

Abstract

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.

Epilepsy Surgery in Childhood Versus Adulthood: What Are We Waiting for?

“…Finally, 27% did not go on to have children, including 50% with ongoing seizures; and first children occurred in most 6 to 15 years after surgery. 6 This study highlights the importance and consistency of patterns of social independence, but also shows how they are delayed in patients with epilepsy.…”

“…Coleman reviewed the trajectory of social milestones in adults who underwent anterior temporal lobectomy for intractable epilepsy, the majority of whom had epilepsy onset during childhood. 6 A consistent sequence of social milestone achievement was identified, going through stages of independence and autonomy, following by confidence, then acceptance and stability. These stages, which are often normal parts of adolescence and early adulthood, occur 2 to 20 years after surgery—disrupting the typical developmental timelines.…”

“…These stages, which are often normal parts of adolescence and early adulthood, occur 2 to 20 years after surgery—disrupting the typical developmental timelines. 6 Furthermore, there are additional disruptions at each step. For example, while they are increasing independence and autonomy, 54% reported changes in relationship dynamics, including conflicts and separations due to the postsurgical adjustment process.…”

“…For example, while they are increasing independence and autonomy, 54% reported changes in relationship dynamics, including conflicts and separations due to the postsurgical adjustment process. 6 Similarly, while 59% underwent gradual return to work within 24 months of surgery, 10% of seizure free and 50% with ongoing seizures subsequently stopped working. Finally, 27% did not go on to have children, including 50% with ongoing seizures; and first children occurred in most 6 to 15 years after surgery.…”

Men with adult-onset epilepsy: Their experiences of health care provider relationship qualities following neurosurgery

“…When successful, this results in a reduction of seizure debilitation and increases subjective wellbeing (SWB). In 40% to 80% of cases, the sustained improvement in patient results can span more than 20 years after surgery, with isolated instances of repeat surgery (Coleman, McIntosh, & Wilson, 2019;Stafstrom & Carmant, 2015). On average, around 45% of lobectomy procedures, including the partial removal of a damaged lobe, result in the successful termination of seizure activity (Englot et al, 2012;Martin, 2016).…”