You're invited to participate in the Seizure Tracker "IT’S NOT JUST SEIZURES™" (INJS) initiative.
Seizure Tracker is following standard guidelines for developing a Core Quality of Life Issues List for people with epilepsy. Our goal is to leverage this list in providing you a way to understand the impact epilepsy has on you and your family as a whole.
WHAT IS A QUALITY-OF-LIFE CORE OUTCOME SET?
A core outcome set (COS) is an agreed-upon, standardized list of quality-of-life issues our community agrees epilepsy doctors should ask about in clinic/hospital visits when seeing a person living with epilepsy.
You can contribute to this important effort!
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During the first two sets of surveys last year, we asked SeizureTracker users to rate items to include in this Core Outcome Set. This survey will serve as a tie-breaker for items equally rated from the previous surveys.
Seizure Tracker® "IT'S NOT JUST SEIZURES™" project stages:
Identify factors (other than seizures) that impact quality of life.
Prioritize these factors and understand how priorities change among different subgroups within the epilepsy population.
Make the prioritized list public so we can better understand the full impact of epilepsy on individuals and families.
Build tools to help manage epilepsy more holistically.
The current quality of life items list was developed through group discussions and past surveys with patients and care providers dealing with a broad spectrum of issues related to epilepsy. With your help, we will continue the effort to prioritize the items according to how they impact you!
Seizure Tracker® "IT’S NOT JUST SEIZURES™" community collaborators: