Seizure Tracker - Epilepsy: It’s not just Seizures™

Epilepsy: IT’S NOT JUST SEIZURES™

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!

Thank you for your interest in the Seizure Tracker INJS initiative. Please email us if you have any questions or comments regarding epilepsy related quality of life.

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.

Survey structure...

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:

Unversity of California - San Francisco

TSC Alliance

Child Neurology Foundation

Dup15q Alliance

Dravet Syndrome Foundation

LGS Foundation

STXBP1 Foundation

Please contact us at info@seizuretracker.com if you have questions about the INJS initiative or would like to join the collaboration.

Other helpful links:
See the results from other surveys
Create a Seizure Tracker account
Current Data Visualizations on Seizure Tracker

Topics included in the INJS QOL survey...

Mood
Language
Memory
Control over your emotions and events around you
Stigma
Social limitations
Anti-seizure medication side effects
Seizure severity
Impact on ability to function
Sense of control over epilepsy
Cognition (Thinking ability)
Patient perceptions about family impact
Fear from seizures
Sleep quality
Ictal and postictal semiology
General health
Impact on family
Work/school limitations
Healthcare utilization
Behavior
Overall quality of life
Womens' health
Epilepsy technology
Barriers to healthcare access
Financial impact