Psychological outcome profiles in childhood‐onset temporal lobe epilepsy

Abstract

SUMMARYPurpose: To examine the effect of childhood-onset temporal lobe epilepsy (TLE) on long-term psychological function and to identify outcome profiles related to the natural course and treatment of TLE. Methods: Psychological function was studied in a prospective, community-based cohort of childhood-onset TLE, approximately 13 years following seizure onset. Fiftythree patients were assessed using a semi-structured psychosocial interview, supplemented by self-report questionnaires measuring quality-of-life, depression, selfesteem, and anxiety. Results: Common patterns were observed, giving rise to four distinct patient groups and psychological outcomes: (1) patients who experienced spontaneous remission of their seizures fared best; their psychological profile was characterized by heightened worry about the possibility of seizure recurrence; (2) patients who progressed to surgery and were seizure free reported adjustment difficulties associated with learning to become ''well''; (3) patients who progressed to surgery and were not seizure free had the poorest psychological outcomes, with depression featuring prominently; and (4) patients with ongoing intractable epilepsy reported psychological and social features consistent with the effects of their chronic illness. Discussion: Patients with childhood-onset TLE face distinctive long-term psychological challenges. The specific nature of these challenges can be understood in terms of the natural evolution and treatment of their epilepsy.

Developmental outcomes of childhood‐onset temporal lobe epilepsy: A community‐based study

“…These results support other studies promoting the early use of surgery in childhood‐onset TLE to protect against poor developmental outcomes (Cross et al., 2006; Elliot et al., 2008; Langfitt & Wiebe, 2008; Lach et al., 2010; Mikati et al., 2010). This view should be tempered, however, by the finding that suboptimal seizure outcome after temporal lobe surgery is associated with increased mood disturbance in adolescents and young adults (Micallef et al., 2010). In other words, the significant effects observed in this study highlight the need for further detailed longitudinal investigations of developmental processes in children with epilepsy and the factors that protect against poor long‐term outcomes.…”

“…Indirect referrals were also obtained by surveying databases from the electroencephalography (EEG), neurology, radiology and medical records departments of the Royal Children’s Hospital. Participants underwent extensive clinical, EEG, neuroimaging, and cognitive investigation at enrolment and at follow‐up in 1997–1999 and 2004–2006, with review of diagnoses at each point (Harvey et al., 1997; Spooner et al., 2006; Micallef et al., 2010). The 10 patients from the original cohort who were not included in this study comprised two patients lost to follow‐up after ascertainment (with no follow‐up information), three patients lost to follow‐up after the 1997–1999 review (one who had persistent seizures, one who was seizure‐free, and one who underwent successful surgery), one patient who was later diagnosed with Rasmussen’s encephalitis, and four patients with the syndrome of benign complex partial seizures of infancy (all of whom were neurologically normal and seizure‐free at the 2004–2006 review; Spooner et al., 2006).…”

Starting at the beginning: the neuropsychological status of children with new‐onset epilepsies*

“…This impact is reflected in an international literature published during the past 30 years with studies emanating from the UK, Canada, Finland, Japan, Australia and the Netherlands. Collectively, these reports include both uncontrolled (Lindsay et al, 1979abc; Wakamoto et al, 2000; Camfield et al, 1993; Harrison & Taylor, 1976; Micallef et al, 2010;) and controlled community and population-based investigations (Jalava et al, 1997ab; Kokkonen et al, 1997; Wirrell et al, 1997; Sillanpaa et al, 1998; Shackleton et al, 2003; Koponen et al, 2007; Geerts et al, 2011) as well as long term (adult) follow-up of national birth cohorts (Cooper, 1965; Ross et al, 1980; Britten et al, 1986; Ross & Peckham, 1983; Chin et al, 2011). Several aspects of this literature are important: 1) Groups of children with epilepsy have been followed prospectively for up to 30+ years in controlled investigations (e.g., Sillanpaa et al, 1998; Shackleton et al, 2003).…”

Children’s Experiences of Epilepsy: A Systematic Review of Qualitative Studies

“…18 10, 15, 17 -19, 23, 24, 27 -29, 32, 33, 37, 40, 42 -44, 46 The machines [EEG], I hate them, all you can feel is cold going onto your heads and jags going in your heads. 33 Fragility of the brain The symbolic interpretation of the brain as a kind of superordinate bodily organ was central to many people's accounts. The involvement of the brain in seizure activity led to deep fears about the fragility of the self.…”

“…too many times or crowd me. 33 Social embarrassment of medicine taking I have people make fun of me a lot at school because I have to take medicine and go to the doctor. 31 31, 33, 47 Inescapable inferiority and discrimination Vulnerability to prejudice No one likes me because I'm a geek…Because I'm in the weird class.…”