Lurie Children’s-led study highlights importance of screening kids with epilepsy for learning and behavioral problems.
Children who develop epilepsy often face challenges beyond seizures that can shape their futures. A long-term study led by researchers at Ann & Robert H. Lurie Children’s Hospital of Chicago found that learning difficulties and behavioral or psychiatric problems — not just seizure control — strongly influence social and educational outcomes in adults who had epilepsy as children.
The federally funded study, published in the journal Pediatrics, followed 241 children and adolescents with uncomplicated epilepsy for an average of 12 years. Researchers tracked medical course, seizure control, education, employment, driving, living arrangements, marital status and criminal involvement as participants transitioned into adulthood. The results show that while seizure control matters for certain practical milestones, learning and psychiatric issues play an independent and often larger role in long-term social and vocational achievement.
The study’s authors emphasize the need for routine screening of children with epilepsy for learning disorders (for example, dyslexia) and behavioral or psychiatric conditions (including ADHD, anxiety, depression and bipolar disorder), regardless of seizure status. Early identification and intervention for these comorbidities may reduce the risk of poor educational attainment, unemployment and social difficulties later in life.
“Frequency and intensity of seizures remain important predictors of how well a child does into adulthood,” says Anne Berg, Ph.D., the study’s lead author and a scientist with the Stanley Manne Children’s Research Institute at Lurie Children’s. “But seizures are by no means the only influencers of social and educational outcomes among adults with childhood epilepsy. Physicians should not assume a child is doing well simply because seizures are controlled.”
Study participants were diagnosed between 1993 and 1997 and treated at neurology practices in Connecticut. All had uncomplicated epilepsy, defined by normal neurologic exams, normal brain imaging and no intellectual disability. Based on their seizure course after diagnosis, participants were grouped as follows: 39% achieved excellent seizure control (no seizures after the first year and in complete remission at last contact); 23% had good control (remission between one and five years after diagnosis); 29% had a fluctuating course with seizures that came and went but generally responded to medication; and 8% experienced long-term pharmacoresistant seizures.
Seizure course predicted several concrete outcomes. Those with excellent seizure control were much more likely to be pursuing college or be employed: over 90% of the excellent-control group were either enrolled in higher education or had part- or full-time employment, compared with 60% in the poor-control group. Driving was likewise correlated with seizure control: more than 90% of the good-or-excellent group had a driver’s license, versus roughly 60% among those with poor seizure control.
However, seizure control did not explain all differences. A history of learning difficulties significantly reduced educational achievement: participants with learning problems were about 60% less likely to have completed college and had an almost 50% higher risk of unemployment, regardless of how well seizures were controlled. Psychiatric and behavioral disorders had a strong effect on social measures: individuals with emotional or psychiatric histories were around 60% less likely to finish college and approximately 50% less likely to live independently from parents.
Seizure control did not significantly affect likelihood of encountering legal problems. Instead, disruptive behavior disorders, such as oppositional defiant disorder, were associated with nearly three times the risk of trouble with law enforcement, irrespective of seizure outcome.
In summary, the study suggests a two-part approach to improving long-term outcomes for children with epilepsy: effective seizure management to support employment, education and driving, and systematic screening and treatment of learning and psychiatric disorders to improve broader social and vocational outcomes. Addressing these comorbid conditions during childhood and adolescence may be a key step in helping young adults with childhood-onset epilepsy reach their full potential.
Co-investigators on the study included Karen Rychlik (Stanley Manne Children’s Research Institute at Lurie Children’s), Christine Baca (VA Greater Los Angeles Healthcare System), Barbara Vickrey (Icahn School of Medicine), Rochelle Caplan (University of California, Los Angeles), and Francine Testa and Susan Levy (Yale University). The study was funded by the National Institute of Neurologic Disorders and Stroke (NIH) under grant R37-NS31146.
Original research: “Determinants of Social Outcomes in Adults With Childhood-onset Epilepsy” by Anne T. Berg, Christine B. Baca, Karen Rychlik, Barbara G. Vickrey, Rochelle Caplan, Francine M. Testa, and Susan R. Levy, published in Pediatrics (online March 16, 2016).
Abstract
Determinants of Social Outcomes in Adults With Childhood-onset Epilepsy
BACKGROUND: Adults with childhood-onset epilepsy have poorer social outcomes than their peers. This study examined the relative influence of seizure course versus learning and psychiatric problems.
METHODS: In a longitudinal community-based cohort of 241 young adults (22–35 years) with uncomplicated epilepsy, researchers assessed seizure course, history of psychiatric and learning disorders, and multiple social outcomes. Seizure course was categorized as Excellent (no seizures after year one; complete remission at last contact), Good (seizures in years 1–5 but remission at last contact), Fluctuating (variable control, never pharmacoresistant), and Pharmacoresistant (long-term drug-resistant seizures). Multiple logistic regression identified contributors to each outcome.
RESULTS: Better seizure course predicted higher rates of college completion, employment or enrollment, and driving. Poorer seizure course was associated with a higher likelihood of having offspring, particularly among unpartnered women. Learning problems and psychiatric disorders negatively influenced most social outcomes independent of seizure control.
CONCLUSIONS: For young adults with uncomplicated childhood-onset epilepsy, seizure course primarily affected education, employment and driving, while histories of learning and psychiatric disorders adversely affected most adult social outcomes. These findings point to areas for screening, counseling and transition planning to improve long-term social and vocational outcomes.