Social Adjustment and Competence 35 Years After Onset of Childhood Epilepsy: A Prospective Controlled Study

Abstract

Summary: Purpose:To study the effect of childhood-onset epilepsy without other neurologic deficit on adult social adjustment and competence.Methods: Social competence was studied in a prospective, population-based cohort of childhood-onset epilepsy after a mean follow-up of 35 years. One hundred patients (60% of the total cohort) had no other neurologic problems ("epilepsy only"), and for each patient, two matched controls, a "random" control and an "employee" control were chosen.Results: Good social outcome was significantly reduced in the "epilepsy only" cohort compared with random controls: education [cumulative odds ratio (COR), 2.4; 95% confidence interval (CI), 1.4-4.11; employability (COR, 7.3; 95% CI, 2.7-20.0); and marriage rate (COR, 3.7; 95% CI, 1.9-7.3). The patients with epilepsy rated their own ability to control their lives as "poor or missing" four times more frequently than the employee controls. Patients receiving antiepileptic polytherapy, but not monotherapy, were significantly less satisfied with their present life (OR, 6.7; 95% CI, 1.9-24.1) and felt their general health was significantly poorer (OR, 5.1; 95% CI, 1.2-21.3) than did the employee controls. Furthermore, patients with continuing seizures were significantly less satisfied with their present life (OR, 4.1; 95% CI, 1.1-15.1) than were employee controls.Conclusions: Many patients with "epilepsy only" beginning in childhood have persistent and significant socialadjustment and competence problems in adulthood. Key Words: Pediatric epilepsy-Social adjustment in epilepsy-Education and employability in epilepsy-Life management in epilepsy.

Challenging lives: an exploratory qualitative study of quality of life in young adults living with a chronic neurological condition

“…It would appear that social support constitutes an important protective factor in these young people's lives. These findings are consistent with prior research which has found that young people with chronic illness have higher social dependence, competence and social adjustment needs than their healthy peers (Jalava et al, 1997, Kyngas et al, 2000. However, a balance is required as over-protective parents might lead to over-dependency and reduced autonomy during young adulthood (Seiffe-Krenke, 2006).…”

Behavior and social competency in idiopathic and cryptogenic childhood epilepsy

“…On the other hand, several studies have examined social, educational, and employment outcomes in adults who, years previously as children, had epilepsy. [12][13][14]21,22 These studies focused on individuals with intelligence levels comparable to the population norm and either idiopathic or cryptogenic epilepsy. Many were completely seizure-free and off medication.…”

“…Some studies found that poorer than expected social and educational outcomes occur even in individuals with excellent seizure control who are no longer on medication. [12][13][14] The independent contributions of seizure control, medication, and epilepsy itself on behavior or related outcomes have not been clearly distinguished. We have addressed this issue in the context of a long-term, prospective, community-based study of children initially recruited when first diagnosed with epilepsy.…”

Level of knowledge about and attitude toward, and sources of information about epilepsy

“…Sonuçlar iki grup arasında anlamlı farkların sadece medeni durum ve iş durumu açısından olduğunu göstermiştir. Önceki çalışmalarla [10][11][12][13] uyumlu olarak mevcut çalışmada da, EOB arasında bekarların ve işsiz olanların sayısı, kontrol grubuna oranla anlamlı oranda daha fazladır. Çalışmanın bulgularının ilk gösterdiği, epilepsi grubu katılımcılarının Mevcut çalışmada ayrıca, epilepsi hakkında sahip olunan bilgi düzeyinin, yaşam kalitesini yükseltmek, hastalığa uyumu arttırmak ve stigmayı düşürmek açısından son derece önemli bir değişken olduğu bilindiğinden, epilepsi ve kontrol katılımcılarına, epilepsiye dair sahip oldukları bilgi miktarını yeterli bulup bulmadıkları sorulmuştur.…”