Mortality in two independent First Seizure Clinic cohorts up to 20 years post epilepsy diagnosis
BACKGROUND: Excess mortality has been demonstrated in individuals with epilepsy. Here, we aimed to examine mortality in patients from two independent First Seizure Clinics (FSCs), up to 20 years after a new epilepsy/unprovoked seizure diagnosis assigned by epileptologists. Patients were also grouped according to pre-existing medical conditions and mortality in these subgroups was examined. METHODS: In this observational study, adults (≥18 years) diagnosed with epilepsy/unprovoked seizures between 2000-2010 at Austin Health and Royal Melbourne Hospital FSCs were included. FSC information regarding epilepsy and pre-existing conditions (alcohol/substance use, psychiatric disorders, cancer, cardiac and neurological) was audited and linked to the Australian National Death Index. Patient deaths were compared to population age, sex and year-specific death rates with Standardized Mortality Ratios (SMR). RESULTS: Among N = 1545 diagnosed with epilepsy/unprovoked seizures (excluding high-grade brain tumors), 282 (18%) had deceased (all-cause mortality SMR 2.0; 95%CI 1.8-2.3). Excess mortality to 15 years post-diagnosis was demonstrated at both independent FSCs. For the n = 1375 with information about pre-existing conditions, the SMR was higher for patients with ≥ 1 pre-existing condition (n = 593; 2.6, 95%CI 2.2-3.0) than for those without (n = 782; SMR 1.4, 95%CI 1.1-1.8). Among patient subgroups, reported problematic substance use (±a psychiatric disorder, n = 227) had the highest SMR (5.8; 95%CI 4.5-7.6). CONCLUSION: Both FSCs demonstrate persistent excess mortality after a new epilepsy diagnosis. Patients who report a history of previous medical conditions, particularly those with problematic alcohol/substance use are potentially important risk groups and warrant further examination. These findings contribute to patient counselling, and inform further investigation.
Authors
- Honor Coleman (ORCID: https://orcid.org/0000-0002-5532-9327)
- Piero Perucca (ORCID: https://orcid.org/0000-0002-7855-7066)
- Anne M. McIntosh (ORCID: https://orcid.org/0000-0002-5020-260X)
- Tahir Hakami (ORCID: https://orcid.org/0000-0002-1933-6044)
- Samuel F. Berkovic (ORCID: https://orcid.org/0000-0003-4580-841X)
- Patrick W. Carney (ORCID: https://orcid.org/0000-0002-7518-564X)
- K. Meng Tan (ORCID: https://orcid.org/0000-0002-5799-5534)
- Patrick Kwan
- Terence J. O’Brien
- Genevieve Rayner
Institutions
- The Royal Melbourne Hospital (AU)
- The University of Melbourne (AU)
- Florey Institute of Neuroscience and Mental Health (AU)
- Eastern Health (AU)
- Mental Health Australia (AU)
- Gold Coast Health (AU)
- Epilepsy Foundation (AU)
- Alfred Health (AU)
- Austin Health (AU)
- Monash University (AU)
- Jazan University (SA)
Publication Details
- Journal
- Epilepsy & Behavior
- Published
- 2026-09-12
- DOI
- https://doi.org/10.1016/j.yebeh.2026.111257
- Primary Topic
- Epilepsy research and treatment
- Type
- article
- Field-Weighted Citation Impact
- 0.00
Funders
- Royal Melbourne Hospital