Epilepsy Ontario is inviting adults living with epilepsy, or caregivers of people living with the condition, to participate in a survey about their experiences with epilepsy as well as treatments for seizures.
The main purpose of the survey is to gather evidence from the group that is the most knowledgeable about the day-to-day reality of epilepsy — those who live with the condition — and share their expertise with the Canadian Common Drug Review.
The survey aims to discover the benefits and limitations people are finding with the treatments they have used as well as to learn about the impact of epilepsy on their life, whether small or large.
The Common Drug Review is a process new medications go through after Health Canada has verified their safety and effectiveness and approved them for marketing.
Health Canada has recently approved Aptiom (eslicarbazepine acetate) for adults who have partial seizures, which are seizures that begin in a limited region of the brain.
The medication is now going through a health technology assessment process, which examines Aptiom from a cost-benefit perspective.
During this process, patient organizations have the opportunity to make a submission on behalf of those living with a seizure disorder, which is why Epilepsy Ontario is asking people for their input.
“Our submission is focused on the implications that come from living with epilepsy and what people’s experiences are with treatments that are currently available,” says epilepsy information specialist Suzanne Nurse.
“We are hoping to hear from people with a wide range of experiences… different seizure types, different responses to treatment — including side-effects — and different levels of seizure control.”
The online survey, which takes about 15 minutes to complete, is available to anyone living with epilepsy who is 18 years old or older. Family members of those living with epilepsy can also take the survey.
Participants do not need to have any knowledge of Aptiom to participate. However, if they have used this drug, Epilepsy Ontario would like to hear from them too.
In addition to the Common Drug Review submission, Epilepsy Ontario may also use information from this survey to communicate the experiences of people living with epilepsy, as well as experiences of their families and caregivers, in future patient evidence submissions for drug reviews or other initiatives.
“We’re looking for information (about) what patients’ preferences are and what their feelings are related to treatment,” says Nurse, adding Epilepsy Ontario is acting as a conduit for the patient voice in the review process.
Adults living with epilepsy or family members who are caring for someone with the condition can click here to participate in the survey.
Writer: Deron Hamel
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