Quality of Life Research Update – Ms. Mary Secco and Collaborators*

When confronted with a diagnosis of epilepsy, many people struggle with how to cope. EpLink has funded a research study to see if an epilepsy education and support services program – such as the Clinic to Community (C2C) program - can provide patients with the skills to better manage their condition and feel more confident in their ability to cope. Recently, Ms. Secco and her team have gathered data to answer these research questions.

The Clinic to Community (C2C) program provides education and support for individuals living with a seizure disorder or a diagnosis of epilepsy. The main component of C2C is a 60-minute education session that provides an overview of seizures, epilepsy, risk management (including sudden unexpected death in epilepsy, or SUDEP) and seizure first aid to children and adults with epilepsy, as well as their caregivers.

To date, 830 people have received an education session. This includes 332 individuals with epilepsy and 498 family members. Among parents of children with epilepsy, 71% reported that the C2C program made them feel less anxious about their child’s diagnosis, and 78% said the program definitely or probably helped them to manage their child’s seizures.

One of the aims of C2C is to reduce unnecessary visits to hospital emergency departments. Many parents and teachers are unsure when a seizure is considered an emergency, which results in multiple visits to emergency rooms. After going through the C2C program, 86% of participants reported that they were more confident in knowing when a seizure is a medical emergency. In addition, 71% of parents felt that the information they received about nighttime and water safety would help them to prevent an injury to their child during a seizure.

C2C also provides school and community support by visiting schools and meeting with students. 74% of parents with children aged 4-12 years identified school support as their top priority. In year 2, 43% of parents took advantage of the opportunity to have a C2C educator speak to their child’s class.

The evidence to date suggests that a community-based educational and support program can reduce anxiety, improve self-management skills, prevent unnecessary visits to the emergency department and help people with epilepsy to better manage their condition. The C2C program is currently offered to individuals and families who live in the Southwest and Erie St. Clair local health integration network (LHIN). In the near future, C2C will also be offered through local community epilepsy agencies, including Epilepsy Toronto, Epilepsy Ottawa, Epilepsy Southcentral Ontario and Epilepsy Durham Region. For more information, visit www.clinictocommunity.ca.

To view the full progress report for year 2 of the C2C program you can click here.

*Collaborators: Dr. Andrea Andrade, Dr. Jorge Burneo, Dr. Craig Campbell, Ms. Margo Devries-Rizzo, Dr. Nora Fayed, Dr. Hema Gangam, Dr. Simon Levin, and Dr. Asuri N. Prasad

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