Patients with pediatric-onset epilepsy show residual social difficulties in adulthood that remain despite good seizure outcomes. Following a Japanese cohort of 148 patients with childhood-onset epilepsy over 6–37.5 years (mean 19 years), Wakamoto et al. [48] found lower rates of marriage, education, and employment, despite the fact that 63 % of patients were in remission. However, when examining patients with normal intelligence, the education and employment differences were no longer significant. Similarly, a group of patients from Finland followed for >30 years had worse social and educational outcomes in comparison to healthy controls, and patients not in remission were at high risk of having lower socioeconomic status [8, 27, 49]. Patients were also less likely to be married, to live with someone, or to have children. However, patients with “epilepsy-only” had better outcomes in each measure relative to patients with epilepsy and other disabilities, although they were more likely than controls to feel lonely and to have lower perceived control over their lives. Additionally, “epilepsy-only” patients taking multiple AEDs reported lower life satisfaction and poorer health relative to controls. Other studies of long-term psychosocial outcomes reveal similar results [50, 51]. It is also important to note that these adverse social situations remained even in patients who entered adulthood seizure- and medication-free.

Given the persistence of social problems among individuals with childhood-onset epilepsy, an important question is whether surgery and associated seizure outcomes have an impact on social outcomes. To date, there has been little research to address this question.

Hum et al. [52] found that 1.5–3.4 years (mean 2.4 years) following surgery, youth with persistent seizures did not report an improvement in their social function, whereas mixed results were found among seizure-free patients. Those who reported improvements commented on the contribution of their decreased fear of having seizures, their perception of feeling normal and increased autonomy (less parental monitoring). Those with continued peer difficulties reported on the lingering stigma and discrimination associated with epilepsy. Similarly, Park et al. [53] found that social adaptation, assessed by the number of intimate friends, was significantly associated with seizure control and school performance 1–5.3 years (mean 3.2) years postsurgery.

Lach et al. [38] utilized various subscales of the QOLIE-31 and SHE to examine the psychosocial outcomes of 71 surgical patients and a control group of 31 nonsurgical patients with active seizures, a minimum of 2 years (mean: 8.86, SD: 4.93) following surgery. General social well-being was found to be significantly better in surgical seizure-free patients compared with patients with active seizures. Additionally, surgical seizure-free patients were less likely to report the perception that their epilepsy posed a handicap in social and personal functioning, and had better scores pertaining to work and activities. The groups did not differ in the number of friends they had, the number of times they had contact with friends on a weekly basis, how well they knew their neighbors, or in their principal activity (i.e., student, employed or unemployed). However, the surgical seizure-free patients were more likely to be involved in a romantic relationship, to have taken a recent extended trip with friends, and to belong to community clubs or organizations.

Keene et al. [54] also found that at least 2 years after surgery (mean 7.6 years, SD 3.8 years) better social outcomes were associated with a greater than 50 % reduction in seizure frequency; such patients were more likely to have stable relationships, be financially independent, and have a higher level of education. This relationship was only significant when patients under the age of 18 (n = 20) were excluded from the analysis. Interestingly, correlating the social outcome of financial independence, level of employment, and marital/relationship status with ratings of improved QOL (reported in [33]) did not yield significant results, suggesting that patients’ reports of improved QOL may not translate to improved social and socioeconomic status.

Similar to the long-term QOL outcomes, overall social functioning improves following pediatric epilepsy surgery. When evident, improvements in social functioning have been associated with seizure freedom or reduction. However, improvements are not seen in all domains even in seizure-free patients and different studies find different areas that improve and areas that remain diminished in the long term. Where social functioning remains diminished, lingering stigma and discrimination have been reported. It is also important to note, that the few studies that have examined long-term social outcomes have not explored the relationship between social outcomes and various family variables (e.g., family function, stress) and child variables (e.g., affective symptoms).