Impact of epilepsy surgery in childhood : motor function, health related quality of life and self perceived competence

In a prospective longitudinal design, we studied all children referred to the Dutch Collaborative Epilepsy Surgery Programme (DuCESP) between 1996 and 2001. Some 40 patients per year were referred all over the country. After careful screening, about 10-15 children per year can be operated. The International Classification of Functioning, Disability and Health (ICF) provided the framework for studying health-related consequences of epilepsy surgery (WHO, 2002). The ICF distinguishes three levels of human functioning, i.e., body function and structure, activities and participation in social life, and by defining disability at each level, as impairment, activity limitation or participation restriction. Covering the period from prior to epilepsy surgery up to two years after the operation, our study focuses on 1) Impairments: measured as change in seizure frequency and severity, and effects on muscle strength, range of motion and muscle tone, 2) Limitations in activities, assessed in terms of motor functioning and self-care, mobility and social function. 3) For the level of participation, epilepsy-related restrictions were assessed. In addition we measured the course of health-related quality of life (HrQoL) and self-perceived competence. In fact, we followed two groups. One comprised 52 children who underwent epilepsy surgery between 1996 and 2001 at the Wilhelmina University Children’s Hospital. The other group consisted of 45 children who were not eligible for epilepsy surgery between 1996 and 2001. In children after epilepsy surgery a considerable seizure reduction was found, 72% were free of seizures. The score on seizure severity showed an almost maximum improvement immediately after surgery and remained so for the subsequent 2 years. Motor impairments: after hemispherectomy, muscle strength and muscle tone on the side of the body contralateral to the hemispherectomy, decreased in the first six months after surgery, but returned to pre-surgical baseline thereafter, except for the distal part of the arm. Motor activities: mean increase was 20% after two years, while mean ADL-increase was even more than 20 scale-points. In nearly all children epilepsy-related restrictions had normalized in the two years after surgery. In all types of surgery, the children’s evaluations of both the quality and frequency of their activities in physical, social and cognitive domains was worse than that of the reference group of healthy children before surgery. Parents and children evaluated health-related quality of life in activities as having improved after surgery. The children's self-perceptions of social acceptance tended to improve within the six months after surgery and gradually ameliorated thereafter. Two years after surgery, children perceived themselves as being socially more competent and as having greater self-worth. Scores on activities improved post-surgery statistically significantly at group level on M-ABC and GMFM and children also improved significantly with respect to ADL-function and caregiver's assistance (PEDI). Severity of epilepsy, motor functioning and epilepsy-related restrictions worsened in 45 children with pharmaco-resistant epilepsy, who were not eligible for epilepsy surgery. Parents and children evaluated the frequency of social activities as being significantly less than normal at baseline and during follow-up. Children with epilepsy had feelings of inferiority and were concerned about their epilepsy. Self-perceived competence: children evaluated their scholastic and athletic competence and behavioural conduct as being less than those of a healthy reference group, and when followed up, adolescents perceived themselves in almost all domains as having less competence than a healthy reference group