By Deron Hamel

Canadian children living with epilepsy say it’s their need for social and emotional support from friends and family – not their seizures – that concerns them most about their quality of life.

This is the main finding from a recent study that surveyed 480 children aged eight to 14 who are living with active or medication-managed epilepsy. The children, who were patients from six Canadian paediatric epilepsy tertiary care ambulatory programs, were surveyed on 25 questions directly related to their quality of life using the Child Epilepsy Quality of Life Questionnaire.

“I think this article highlights the fact that we should be very careful about not dismissing children’s perceptions of their lives because we may be missing a very important point of view,” Dr. Nora Fayed, a McMaster University researcher and the study’s lead author, says in an interview with Neurology Today.

Suzanne Nurse, Epilepsy Ontario’s director of information and client services, says the study’s findings reinforce a concept that has been gaining momentum in recent years, “and which any individual or family living with epilepsy can attest to – that epilepsy is more than just seizures.”

“We’re very happy to see research with a focus specifically on the child’s point of view and wish that good quality of life indicators would be added to more studies, such as clinical trials for epilepsy treatments,” Nurse says.

For those working with people living with seizure disorders, improving quality of life is the No. 1 goal, Nurse adds. The study, she notes, is another step towards helping children with epilepsy enhance their quality of life.

“This study gives us a better understanding of the factors that make the biggest difference in the lives of children with epilepsy,” Nurse says. “With this knowledge we can focus our efforts where they matter most.”

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