Today’s research update will focus on the results of EpLink’s Research Priorities Survey.
The survey was created to obtain feedback from people living with epilepsy, their caregivers and families, and representatives from the Community Epilepsy Agencies on what research is important to them. The survey was available to the public from May 18 to September 2, 2016, and was promoted through social media, the Community Epilepsy Agencies, and EpLink’s research updates.
In total, there were 139 responses received. Of the people who completed the survey, 40.3% of people were living with epilepsy, 30.9% of people were related to someone with epilepsy and 22.3% of people were caregivers (please note that people were able to select all relationships that applied to them).
The survey participants were then asked to rate the importance of each of EpLink’s current research themes – diet therapy, diagnosis & care services, genetics & epigenetics, drug therapy, quality of life, seizure prediction & brain stimulation, and seizure surgery. Based on the responses, quality of life, seizure prediction & brain stimulation, and drug therapy were the research areas that received the most ‘extremely important’ ratings.
When participants were asked to devise their own research project, there were 4 major themes that were identified from their comments – treatments for epilepsy, causes of seizures/epilepsy, support, and co-existing conditions. Each of these 4 themes consisted of more specific sub-themes, listed below from the most frequently mentioned to the least (please note that comments containing multiple research project suggestions were put into more than one relevant sub-theme).
- Treatments for epilepsy – Marijuana products, alternatives to drugs, curing epilepsy, technologies, surgery, improving current drugs/new drugs, gene therapy/testing, diet therapy
- Causes of seizures/epilepsy – Research into understanding the causes of seizures/epilepsy, causes of other syndromes, triggers, lifestyle factors, genetics, head injury
- Support – more information, programs, resources for female-related issues, funding
- Co-existing conditions – cognition/mental health, quality of life, mortality/SUDEP
The information gathered in this survey, along with feedback from EpLink’s non-profit advisory committee, will serve to inform EpLink’s restructuring in 2018 and beyond. The hope is that EpLink’s research will accurately represent the patient voice and be relevant to the needs of people living with epilepsy.
The results of this survey, along with some additional figures, will be published on EpLink’s website before the end of November.