Epilepsy is so much more than just a medical diagnosis. Quality of life can often be overlooked and the impact of living with seizures on self and family is limitedly understood. To better improve on this aspect of epilepsy care, My Epilepsy Story is partnering with Seizure Tracker to promote a series of surveys that will illuminate the most influential life factors on seizure care and treatment.
Our partner, Seizure Tracker, has collaborated with University of California, San Francisco (UCSF), in addition to various other patients, health providers, and organizations to develop the IT’S NOT JUST SEIZURESTM Quality of Life survey that aims to assess what are the most impacting psychosocial, cognitive, socioeconomic, and other social/health factors on epilepsy care and treatment. More clarity on the influence of epilepsy on all aspects of one’s life and how circumstances of one’s life can reciprocally affect quality of seizure treatment is critical to improve patient outcomes and experience. This survey will also allow for the identification of vulnerable subgroups and the development of more individually targeted care and tools for patients.
We encourage all patients with epilepsy to complete the IT’S NOT JUST SEIZURESTM Quality of Life surveys, in addition to caregivers of people with epilepsy, healthcare providers to people with epilepsy, and epilepsy researchers. Robust participation will improve the quality of data, so we also encourage you to share the IT’S NOT JUST SEIZURESTM Quality of Life surveys on social media!