Pediatric epilepsy surgery patients show normal psychosocial development at long-term follow-up despite dissatisfying family dynamics

Abstract

Drug-resistant pediatric epilepsy involves unpredictable seizures and long-term medical management. Both factors can alter a child's psychosocial development and the dynamics of the family, to the detriment of patient and family wellbeing. While drug-resistant pediatric epilepsy can be successfully treated by neurosurgery in some cases, the outlook for psychosocial and family functioning after surgery remains unclear. A total of 163 participants across four groups took part in the current study: these were (i) individuals who had undergone surgical treatment of drug-resistant focal seizures approximately five years prior as children, and were now largely adolescents or young adults (‘Patients’; n = 23), (ii) their caregivers (‘Patient Caregivers’; n = 27), (iii) healthy individuals of similar age and gender to the Patients (‘Controls’; n = 53), and (iv) their caregivers (‘Control Caregivers’; n = 60). Based on similar software validated in adults, we built an interactive computer program, ‘Living with Epilepsy’, to evaluate the achievement of age-specific developmental tasks in Patients relative to their peers. The Family Adaptability and Cohesion Scale measured family dynamics. The findings showed that in the context of seizure freedom, after pediatric epilepsy surgery, Patients are similar to their healthy peers in terms of attaining developmental tasks, with no differences between the Patient and Control groups (P > .05). Family dynamics, however, seemed resistant to postsurgical adaptation, with Patients reporting lower levels of balanced family dynamics (cohesion, flexibility) and higher rates of unbalanced family dynamics (disengagement, chaos, rigidity, enmeshment) relative to Patient Caregivers (P < .001–0.041), and the Controls (P = .011–0.034). Patients also reported reduced family satisfaction compared with that of Patient Caregivers (P = .002), which was associated with polytherapy prior to surgery; that is, more drug-resistant seizures. These findings suggested that childhood-onset epilepsy has a lasting effect on family functioning, even when the child has an optimal medical and psychosocial outcome. These initial findings have significant implications for the provision of pre- to postoperative family support in pediatric epilepsy cases.