Affiliations: Department of Pediatrics, Faculty of Medicine, University of Yamanashi, Chuo, Yamanashi, Japan | Interdisciplinary Graduate School of Medicine and Engineering, University of Yamanashi, Chuo, Yamanashi, Japan
Note:  Corresponding author: Dr. Hideaki Kanemura, Department of Pediatrics, Faculty of Medicine, University of Yamanashi, 1110 Chuo, Yamanashi 409-3898, Japan. Tel.: +81 55 273 9606; Fax: +81 55 273 6745; E-mail: [email protected]
Abstract: Reducing negative attitudes such as stigma for children with epilepsy is one of the most important goals of clinical management. However, it is not investigated how seizure frequency can affect perceived stigma in children with epilepsy. The purpose of this study was to identify a relationship between seizure frequency and perceived stigma in Japanese children with epilepsy. Inclusion criteria were: (1) age of 12–18 yr, inclusive; (2)≥6 mo since epilepsy onset; and (3) the ability to read and speak Japanese. As a control group, 15 healthy children were recruited. A questionnaire concerning measures of psychosocial functioning was divided into five parts. Participants indicated whether they agreed or disagreed with each statement using a 5-point scale. In addition, participants were asked to rate how often they felt or acted in the ways described in the items on a 5-point scale using the child stigma scale. Participants comprised 33 Japanese patients (18 boys, 15 girls) with epilepsy. Children with frequent seizures showed significant impairment of psychosocial functioning compared to seizure-free children (P < 0.01). In addition, greater perceptions of stigma were associated with greater seizure frequency according to the child stigma scale. Children with frequent seizures perceived themselves as significantly more stigmatized compared to seizure-free children (P < 0.01). A relationship was seen between current seizure frequency and perceived impact of epilepsy and perceived stigma. Children with less seizure may have less internal contribution (perceived stigma). Although stigma is multivariable, better control of seizures may contribute to reduce perceived stigma and improve quality of life in children with epilepsy.
Keywords: Epilepsy, stigma, psychosocial functioning, quality of life, seizure frequency, children