Data from the AEP’s pilot participants spanned three cohorts: first unprovoked seizure (FUS), newly diagnosed (NDE) and drug-resistant epilepsy (DRE), in adults aged 18-65 years. Baseline clinicodemographic information was collected from the participants and they completed questionnaires to assess their quality of life, work productivity and care needs.
This recently published paper [Work productivity, quality of life and care needs: An unfolding epilepsy burden revealed in the Australian Epilepsy Project pilot study paper] has identified the care burden faced by working-age Australians living with epilepsy, and found those living with focal drug-resistant epilepsy had lower quality of life scores and were less likely to participate in paid employment compared to those with a new diagnosis of epilepsy.
Other key insights of the study include:
· Epilepsy may substantially impact quality of life and work productivity, causing varying levels of required care.
· Almost one in five people in the study’s cohorts required informal care from family and friends.
· The health economic burden of epilepsy varies with different stages of the disorder.
Success of the pilot study has led to the AEP securing $30mil in funding from the Medical Research Future Fund, enabling transition to a five-year main study.
The study results will assist researchers to measure the impact of the AEP on important personal and societal health economic outcomes for working-age Australians.
The Australian Epilepsy Project is made possible through the combined support of The Florey and the University of Melbourne and is funded by the Medical Research Future Fund.
AEP's SA Lived Experience Ambassador Ned, shares his thoughts about his mum for Mother's Day
I've Got This! Owing My Epilepsy
