Watch Dr Emma Foster accept the research grant award and hear a bit about the project.
Project Summary:
Epilepsy is a neurological disorder that causes recurrent seizures. More than 150,000 Australians live with epilepsy, and it can start at any age. Epileptic seizures can cause serious injuries (e.g., broken bones), accidents (e.g., falls, drowning), affect people’s quality of life, and can even lead to death. The primary aim of epilepsy treatment is to control seizures. Two out of every three people living with epilepsy can become seizure free on antiseizure medications. However, antiseizure medications will not work if they are not taken. Distressingly, recent studies report that half of all Australians living with epilepsy do not take their antiseizure medications as prescribed. Similar findings have been reported internationally. With the generous support of Brain Foundation, our research team will conduct interviews and focus groups with key stakeholders (people living with epilepsy and healthcare providers). We aim to understand why people may or may not take antiseizure medications when they are first recommended, or why they may choose to discontinue antiseizure medications months or years after starting them. We will also find out what information about antiseizure medications is important to people living with epilepsy. We will workshop this information into the existing resources provided by national patient advocacy groups Epilepsy Action Australia and the Epilepsy Foundation. This study’s targeted approach centres around people’s lived experience, aiming to improve antiseizure medication adherence, and reduce otherwise avoidable seizures, seizure-related injuries, accidents, and death. We sincerely thank the Brain Foundation for their support, and are honoured to have received this prestigious award.
Reports:
December 2024: Progress Report >
July 2025: Journal article published in Epilepsia Open – “Facilitators and barriers of antiseizure medication adherence from Australian healthcare providers’ perspectives: A qualitative study”
This journal article contains the results of the first part of the study – understanding barriers to medication adherence from the perspective of health providers. The paper is open access, which means anyone with the link can download and read the full paper.
Key points:
- This study explored antiseizure medication (ASM) treatment gaps from the perspectives of Australian epilepsy healthcare providers (HCPs)
- HCPs in our study had supported hundreds of people’s epilepsy journeys over many decades and had in-depth knowledge of healthcare systems
- HCPs felt busy lifestyles and shift work was linked with forgetfulness
- HCPs also reported that for their patients, young age and male gender influenced health prioritisation
- Important barriers to ASM adherence included overburdened healthcare systems in metropolitan areas, and limited access to healthcare in rural settings
- In terms of supporting ASM adherence, the HCPs in this study reported that patients found it helpful to add ASMs to existing routines (e.g., teeth brushing) and use smartphone alarms or apps
Read the full article in Epilepsia Open >
The Brain Foundation is dedicated to funding the next generation of Australian research into brain disorders, diseases, and injuries, with the ultimate goal of advancing diagnoses, treatments, and patient outcomes.