Quality of life (QoL) refers to a person’s general sense of well-being and satisfaction. It is related to all emotional, social and physical aspects of a person’s life, all of which can be affected by epilepsy. Epilepsy is not just a seizure disorder, and people with epilepsy are at risk of having other health conditions that can affect quality of life. These co-existing conditions can impact both physical and mental health. The three studies described below aim to improve quality of life in people with epilepsy through a variety of approaches.
Strategies for Epilepsy & Memory (STREAM) Study
This is a cognitive interventional study designed to provide strategies to improve everyday memory function in people with epilepsy. Delivered at a distance by trained facilitators, this 8-week intervention will provide interactive weekly sessions, video learning tools and an online portal. Participants will learn the fundamentals of memory function and will be introduced to new internal and external memory strategies each week. Participants will have the opportunity to practice these strategies both in a group setting and on their own time.
This program is modeled after a number of different successful memory interventions, but is unique in that it is specific to people with epilepsy, and the memory problems they may encounter in everyday life.
Interested participants should contact the study coordinator, Sahil Patel, at firstname.lastname@example.org or call 416-978-6381.
Download the STREAM study promotional brochure here.
Clinic to Community® (C2C) Randomized Control Trial
In Phase 2, Clinic to Community® (C2C), a coordinated care program for people with epilepsy, demonstrated that a one-on-one, 60-minute educational session:
- Improves the epilepsy knowledge of parents and adults living with epilepsy.
- Helps parents and adults living with epilepsy to know when a seizure is a medical emergency and when it is not.
- Helps to reduce injury in children with epilepsy.
- Develops coping and self-management skills in parents and adults living with epilepsy.
- Reduces anxiety and social isolation in parents and adults living with epilepsy.
In Phase 3, a randomized control trial of the Clinic to Community (C2C) Program will examine emergency department usage in adults with epilepsy in the London area. This trial will examine the feasibility of implementing C2C in emergency settings, the frequency of emergency department usage in the 12 months following the intervention, and will examine quality of life, stigma, epilepsy knowledge and self-management skills following the provision of the C2C program.
Not currently recruiting
The Epilepsy and School Success (EPASS) Study
The EPASS study was developed in response to knowledge needs of teachers when working with students living with epilepsy and fits within two priorities of the Ontario Ministry of Education. The study is now closed. Results have been published in Epilepsy & Behaviour and were presented in a poster at the Canadian League Against Epilepsy (CLAE) Scientific Meeting held virtually on September 24-26, 2021.
Read the publication titled ‘Brief Video Enhances Teacher Trainees’ Knowledge of Epilepsy’ here.
The Teacher Tool Kit, which includes the training video and booklets, can be found at www.epilepsyforeducators.ca
Read the article titled ‘User-friendly teacher training for epilepsy also finds welcome audiences in parents, neurologists’ found in the International League Against Epilepsy (ILAE) journal, Epigraph, Vol. 24 Issue 2 Spring 2022, here.
Hey! I would like to know if there is any new project or ongoing research that I can take part in, as I am interested in this field and have worked on 2 projects based on QoL out of which one is already published. Let me know if there is an opportunity that I can work on.
Thank you for your message. Are you interested in participating in research or to assist with running a study?
In terms of our Quality of Life research projects, EpLink will be piloting the Strategies for Epilepsy & Memory (STREAM) study over the next few months. This may be an opportunity for you to participate in research. This study aims to examine the effectiveness of a memory skills training program on improving memory in adults with epilepsy.
If you would like more information on this study, please let me know.
-The EpLink team