The quality of life of children with chronic epilepsy and their families: preliminary findings with a new assessment measure.

The aim of this study was to develop and validate a new schedule to measure the impact of epilepsy on children and their families. 30 questions assess four aspects of the child's and family's lifestyle: epilepsy and its treatment, impact on the child, impact on the parent and impact on the family. For each question, two dimensions are considered: the frequency of the problem, and its importance or degree of concern that it causes. The questionnaire was piloted on the parents of 21 children with chronic epilepsy attending a seizure clinic. Epilepsy was well controlled in half of the children and poorly controlled in the remainder. The questionnaire discriminated well between the two groups of children. Further research will be undertaken to assess the usefulness of the questionnaire on a larger and more representative group of children with epilepsy.