People affected by epilepsy asked to take important survey

July 5, 2012

People living with epilepsy and their families have been asked to participate in an important research project that could have great impact on helping attract government funding in areas to enhance the lives of those affected by the neurological disorder.

Researchers were accepting input from adults aged 17 and older who are living with epilepsy, as well as parents of children with epilepsy aged five to 16, to participate in a survey largely focused on discovering what challenges people with epilepsy are facing in their daily living.

The call for submissions ended July 1.

“There is very little known about the impact on the day-to-day life of people with epilepsy — here is our chance to document that in a study that will be published,” says Mary Secco, executive director of the Epilepsy Support Centre in London, Ont.

Secco says that other neurological disorders — Alzheimer’s and Parkinson’s disease, for example — have documentation noting their impact on the daily lives of people, and epilepsy needs to have similar documentation.

“This is really critical. If we don’t have the documentation — and it exists for other neurological conditions — we’re in trouble,” she says.

“If we can document the burden that we know exists on the families, but we’ve not been able to articulate in the literature, it gives us an opportunity to appeal to donors (and) to government to support people with epilepsy.”

One question directed at parents might be, “Is your ability to get paid work impacted by caring for your child?” Another question could be, “Does having epilepsy impact your ability to get a job or to get a driver’s licence?”

The study’s aim is to learn more about people living with a neurological condition and how it impacts their everyday lives. The answers received will help government better understand the impact epilepsy has on people from medical and personal perspectives, notes Secco.

The survey is a component of the Everyday Experience of Living with and Managing a Neurological Condition Study (LINC study), a national research project being conducted by scientists from Dalhousie University, the University of Manitoba, Memorial University, the University of Prince Edward Island and Queen’s University.

Researchers are aiming to engage about 300 people in the epilepsy portion of the study, which will include a short-term analysis, as well as a long-term look at families during the course of several years.

“This is important to a condition like epilepsy, which is episodic — a family could be doing very well one month and very poorly the next month,” says Secco.

The LINC study is part of the National Population Health Study of Neurological Conditions, a collaboration between the Neurological Health Charities of Canada and the Public Health Agency of Canada.

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Writer: Deron Hamel

NOTE – This version corrects an earlier version to inform readers that the call for submissions to the survey ended July 1.