ORCID
- Rohit Shankar: 0000-0002-1183-6933
Abstract
Background: A third of people with epilepsy are drug resistant. People with drug-resistant epilepsy (DRE) have a higher risk of mortality and physical injuries than those who respond to anti-seizure medication (ASM). This study describes patient characteristics, comorbidities, and mortality in people with DRE in the UK. Methods: The Clinical Practice Research Datalink was utilised to select people with DRE prescribed a third ASM between 1 January 2011 and 31 March 2021. Annual incidence and prevalence of DRE, patient characteristics, comorbidities, and mortality rates were analysed. Subgroup analysis was performed by age, sex, presence of intellectual disabilities and time from epilepsy diagnosis to DRE. Results: A total of 34,647 people with DRE were included (mean ± SD age 42.68 ± 23.59 years, 52.6% females). During the study period, annual DRE incidence ranged from 1.99% to 3.12%. As of 31 March 2021, DRE prevalence was 26.6% (95% confidence interval [CI] 26.3%–26.8%). A greater proportion of people with DRE resided in the most deprived regions, with 21.1% and 16.7% in the top two quintiles of the Index of Multiple Deprivation respectively, compared to < 15% in the three less deprived regions. All-cause mortality ranged from 3,687 to 4,802 per 100,000 persons with DRE, four times higher than that in the general population in the UK. Variations existed across subgroups. Conclusions: Considerable disease burden was observed in people with DRE in the UK. The findings emphasise the importance of early DRE diagnosis and appropriate disease management in people who develop DRE.
DOI
10.1007/s00415-023-12165-4
Publication Date
2024-01-19
Publication Title
Journal of Neurology
Volume
271
Issue
5
ISSN
0340-5354
Keywords
Anti-seizure medications, Disease burden, Epidemiology, Intellectual disabilities, Real-world evidence, Refractory epilepsy, Prevalence, Comorbidity, Humans, Middle Aged, Child, Preschool, Male, Infant, Drug Resistant Epilepsy/epidemiology, United Kingdom/epidemiology, Incidence, Anticonvulsants/therapeutic use, Young Adult, Adolescent, Aged, 80 and over, Female, Adult, Aged, Child
Creative Commons License
This work is licensed under a Creative Commons Attribution 4.0 International License.
First Page
2473
Last Page
2483
Recommended Citation
Marston, X., Shankar, R., Danielson, V., Do Rego, B., Lasagne, R., Williams, O., & Groves, L. (2024) 'Real-world evidence of epidemiology, patient characteristics, and mortality in people with drug-resistant epilepsy in the United Kingdom, 2011–2021', Journal of Neurology, 271(5), pp. 2473-2483. Available at: https://doi.org/10.1007/s00415-023-12165-4
