Watch Dr Lin Zhang accept the research grant award on behalf of Dr Emma Foster and hear a bit about the project.
Project Summary:
First seizures (in Epilepsy) are a common and important problem, affecting over 14,000 Australians each year, or almost 10% of people over their lifetime. First seizures are associated with increased morbidity, mortality and hospitalisation, as well as substantial costs to individuals, caregivers and society. Many patients require hospitalisation for treatment of seizure-related accidents, injuries and underlying conditions. Healthcare service utilisation, particularly hospitalisation, is far higher in those with first seizures compared to patients with chronic illnesses. Studies demonstrate the benefits of early epileptologist input regarding diagnostic accuracy, adherence to follow up appointments and delay in seizure recurrence. Unfortunately, as our pilot study regarding first seizure presentations at a large metropolitan centre demonstrated, first seizure management often deviates substantially from recommended practice. In this study we will use state-of-the art data linkage to determine first seizure patient health outcomes including recurrent seizure presentations, all-cause hospital attendances and admissions, serious injuries, comorbidities and mortality. Furthermore, we will determine the health and economic benefits of first seizure clinics as a healthcare intervention through reducing potentially avoidable future health service utilisation by reducing seizure recurrence, morbidity and mortality. Lastly, we will develop a multimodality tool using ‘real-world’ data, including patient and clinical variables and magnetic resonance imaging studies, to predict the chance of seizure recurrence, medical and psychiatric comorbidities, and death, following presentation with a first seizure. This project will establish a solid evidence base for implementation of first seizure clinics into routine practice as an impactful preventative health service intervention, delivering evidence-based care in a cost effective and timely manner. In addition, a robust prognostic model will help identify those at lower risk of seizure recurrence, who may be spared unnecessary workup and costs, as well as those at high risk of seizure recurrence, who may benefit from more intensive monitoring and additional health interventions.
Outcomes:
We constructed life table models to simulate the burden of epilepsy on working age Australians using national published data sources. The life table models were divided into males and females, and into 5-year age categories, from 15-19 years old through to 65-69 years old (i.e., the average working lifetime). We then followed up each age-sex bracket until age 70 years or death, whichever came first. To resemble the real world as accurately as possible, we assumed that 70% of the group with epilepsy had controlled epilepsy, i.e. successfully achieved freedom from their seizures, and 30% had uncontrolled epilepsy, i.e., were experiencing uncontrolled seizures.
In 2017, there were approximately 17.5 million Australians aged between 15-69 years. Of those, approximately 101,646 had epilepsy. We found that epilepsy was slightly more common in females than males, and the age-sex bracket with the highest epilepsy prevalence was females aged 50-54 years. In males, those in the 60-64 years old age bracket had the highest prevalence of epilepsy.
With follow-up until age 70 years or death, we found:
- There were 14,053 excess epilepsy-related deaths. Put another way, if those with epilepsy no longer had epilepsy, 56.1% of these deaths would be avoided.
- The proportion of epilepsy-related deaths were greatest in the 15-19 years age bracket for both males and females.
- Epilepsy was estimated to reduce productivity adjusted life years (PALYs) by 146,202 over a working lifetime. This would equate to $32.4 billion of lost GDP.
- Australians with epilepsy were estimated to incur $4.1 billion in excess direct healthcare costs.
We found that compared to other common diseases, epilepsy exerts a far greater impact on years of life lost and productivity loss per person.
We then used this data to run to run ‘hypothetical’ scenarios and determine the impact that even small improvements in seizure freedom might bring. If seizure freedom in the epilepsy cohort improved by 5% from its current baseline of 70%, i.e. up to 75%, and this level of seizure freedom was maintained up to the end of the follow-up period (i.e., age 70), there would be:
- $533 million reduction in healthcare costs.
- Prevention of 811 excess deaths, 3,961 years of life gained, and 17,438 PALYs saved, equating to $3.9 billion in GDP retained over the working lifetime of this cohort.
If seizure freedom were improved by 10% from the current baseline, i.e., up to 80%, there would be:
- $1.1 billion reduction in healthcare costs.
- Prevention of 1,633 excess deaths, 7,953 years of life gained, and 39,967 PALYs saved, equating to $7.8 billion GDP retained over the working lifetime of this cohort.
This study clearly demonstrates the major costs to society due to epilepsy-related productivity loss. It provides very important data for community organisations and advocacy efforts, government and health policy makers, and clinicians.
Outcomes submitted September 2020.
Publications:
Li Y, Ren T, Burgess M, et al. Early Access to First-Seizure Clinics, Subsequent Outcomes, and Factors Associated With Attendance. JAMA neurology. 2024;81(7):732-732. doi:10.1001/jamaneurol.2024.1187

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.