Thank you for your interest in EpLink’s Research Priorities Survey!
EpLink’s Research Priorities Survey was created to obtain feedback from people living with epilepsy, their caregivers and families, and representatives from community epilepsy agencies on what research areas are important to them.
The survey was available to the public from May 18 to September 2, 2016, and was promoted through social media, community epilepsy agencies, and EpLink’s research updates. During this time, there were 139 respondents who completed the survey.
The survey took roughly 3 minutes to complete and contained three questions. The survey questions are detailed below in bold, along with the responses.
Of the 131 people who completed question #1, 40.3% were living with epilepsy, 30.9% were related to someone with epilepsy and 22.3% of people were caregivers. Since respondents were able to select more than one response, it is important to note that 34 people (24% of respondents) selected two or more relationship options that were relevant to them.
2. If you were to start your own research* project, what would you want to know?
*In science, research is the process of finding answers to something that is not yet explained. For instance, does eating an apple a day really keep the doctor away? To answer this question, we have to do scientific research to see if the nutrients in the apple, when eaten daily, boost the immune system and decrease the number of visits to see the doctor (when compared to someone who does not eat an apple a day).
Of the 139 people who completed this survey, 115 completed question #2. When asked to create their own research project, there were 4 major themes that were identified from the comments: (1) treatments for epilepsy, (2) causes of seizures/epilepsy, (3) support of epilepsy, and (4) co-existing conditions.
Each of these 4 themes consisted of more specific sub-themes, which are shown below. In some instances, comments contained multiple research project suggestions, which were put into more than one relevant sub-theme.
The survey participants were asked to rate the importance of each of EpLink’s current research themes, with 1 being extremely important to 5 being not at all important. EpLink’s current research themes include diet therapy, diagnosis & care services, genetics & epigenetics, drug therapy, quality of life, seizure prediction & brain stimulation, and seizure surgery.
The top 3 research themes that received the most ‘extremely important’ ratings were quality of life (69% of respondents), seizure prediction & brain stimulation (64%) and drug therapy (63%). When the average ratings were examined, quality of life still came out on top (graph not shown).
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.