ArticleEpilepsia open2024
Work productivity, quality of life, and care needs: An unfolding epilepsy burden revealed in the Australian Epilepsy Project pilot study.
Article in Epilepsia open, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers.
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Who cites it
7 citing papers in PubMed.
- Neurologists' Views on the Management of Uncontrolled Epilepsy in Spain: A Preliminary Survey.Neurology and therapy · 2026Article
- Employment and epilepsy disclosure: A neglected research priority.Journal of public health research · 2026Article
- Perspectives on the burden of drug-resistant epilepsy and treatment priorities: Findings from a multistakeholder survey.Epilepsia open · 2026Article
- The molecular basis of KCNH1-related epileptic encephalopathy and the challenge of developing targeted therapeutics.Brain : a journal of neurology · 2026Review
- Seizures beget more than seizures: Understanding the cellular, structural, individual and societal impact of seizures in epilepsy.Epilepsia open · 2025Review
- Ten-year projection of adult epilepsy burden in Australia.Epilepsia · 2025Article
- Work productivity, quality of life, and care needs: An unfolding epilepsy burden revealed in the Australian Epilepsy Project pilot study.Epilepsia open · 2024Article
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Authors and funding
10 authors.
Funding
Abstract
objectiveEpilepsy is a common and serious neurological disorder. This cross-sectional analysis addresses the burden of epilepsy at different stages of the disease.
methodsThis pilot study is embedded within the Australian Epilepsy Project (AEP), aiming to provide epilepsy support through a national network of dedicated sites. For this analysis, adults aged 18-65 years with first unprovoked seizure (FUS), newly diagnosed epilepsy (NDE), or drug-resistant epilepsy (DRE) were recruited between February-August 2022. Baseline clinicodemographic data were collected from the participants who completed questionnaires to assess their quality of life (QOLIE-31, EQ-5D-5L), work productivity (Work Productivity and Activity Impairment [WPAI]), and care needs. Univariate analysis and multivariate regression was performed.
results172 participants formed the study cohort (median age 34, interquartile range [IQR]: 26-45), comprising FUS (n = 44), NDE (n = 53), and DRE (n = 75). Mean QOLIE-31 score was 56 (standard deviation [SD] ± 18) and median EQ-5D-5L score was 0.77 (IQR: 0.56-0.92). QOLIE-31 but not EQ-5D-5L scores were significantly lower in the DRE group compared to FUS and NDE groups (p < 0.001). Overall, 64.5% of participants participated in paid work, with fewer DRE (52.0%) compared with FUS (76.7%) and NDE (72.5%) (p < 0.001). Compared to those not in paid employment, those in paid employment had significantly higher quality of life scores (p < 0.001). Almost 5.8% of participants required formal care (median 20 h/week, IQR: 12-55) and 17.7% required informal care (median 16 h/week, IQR: 7-101). SIGNIFICANCE: Epilepsy is associated with a large burden in terms of quality of life, productivity and care needs. PLAIN LANGUAGE SUMMARY: This is a pilot study from the Australian Epilepsy Project (AEP). It reports health economic data for adults of working age who live with epilepsy. It found that people with focal drug-resistant epilepsy had lower quality of life scores and were less likely to participate in paid employment compared to people with new diagnosis epilepsy. This study provides important local data regarding the burden of epilepsy and will help researchers in the future to measure the impact of the AEP on important personal and societal health economic outcomes.
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