International Bureau for Epilepsy survey of children, teenagers, and young people with epilepsy: Data in China

The goals of this study were to assess the perception of people with or directly involved with childhood and adolescent epilepsy in China, and to gain insight into the real-life effects that epilepsy can have on quality of life, development, and opportunities for the future. Survey questionnaires were developed by the International Bureau for Epilepsy for three groups: teenagers and young adults, parents/caregivers of children with epilepsy, and health care professionals. In total we received 968 responses from 20 cities in China. Nearly two-thirds of teenagers and young adults with epilepsy (64.9%) and two-thirds of parents/caregivers of children with epilepsy (64.0%) who responded to the survey had kept epilepsy a secret from others. When asked specifically about drug-related side effects, more than half of teenagers and young adults with epilepsy reported experiencing side effects, specifically dizziness (23.9%), weight change (22.9%), and headache (14.5%). Health care professionals reported cognitive side effects (94.2%), mood change (56.7%), and skin rash (50%) in their patients with epilepsy. More than two-thirds of the teenagers and young adults with epilepsy (75.7%) expected the condition to hinder their lives in the future, affecting their chances of getting a job (52.6%), continuing their education (35.5%), and getting a boyfriend or girlfriend (33.7%). Among parents/caregivers of children with epilepsy, 85.7% expected the condition to hinder their child’s life in the future. This survey documents some of the real-life consequences of epilepsy and highlights the important challenges and issues faced by people with epilepsy and their families in China. Ensuring that people are as free from seizures as possible and minimizing the side effects of treatment must be the primary goals of epilepsy management.