OBJECTIVES: The Australian Epilepsy Project (AEP) is a prospective study collecting health and economic data on more than 4000 individuals with the aim of developing clinical decision tools to improve management and cost-effectiveness of epilepsy treatment.

METHODS: All participants are adults (18 – 60 years) recruited following a first unprovoked seizure (FUS), new diagnosis of epilepsy (NDE), or with drug resistant epilepsy (DRE). The study included data on quality of life (assessed using the EQ-5D-5L questionnaire), work productivity (using the Work Productivity and Activity Impairment (WPAI) questionnaire), healthcare resource utilisation, and out-of-pocket costs.

RESULTS: In total, 86 participants were included in the pilot analysis, with 50% having FUS, 6% having NDE and 44% having DRE. Overall, 65% were involved in paid work, with a median of 30 hours per week (interquartile range [IQR] 15-40). The working hours and productivity were not significantly different between patients with FUS and those with DRE. Overall, 75% of patients reported out-of-pocket costs related to epilepsy, with a median of A$300 (IQR: 75-1,268) and no significant differences between FUS and DRE. The median overall utility score was 0.805 (interquartile range [IQR]: 0.559-0.921). Patients with FUS had similar utility scores as those with DRE. Of the participants that provided informal care information, 11% required informal care. Patients with DRE did not have significantly different odds in requiring informal care compared to those with FUS (odds ratio [OR]=0.24, 95% confidence interval [CI]: 0.02-2.32, p=0.22).

CONCLUSIONS: For the first time, the AEP will provide information not only on the economic viability of pharmacotherapy optimisation, but also on work productivity, healthcare services utilisation, direct and indirect costs, and informal care. This pilot study highlights the relevance of the data collected in order to develop and deliver high-value care strategies for patients with epilepsy.