How accurate do self‐reported seizures need to be for effective medication management in epilepsy?

Author:

Goldenholz Daniel12ORCID,Brinkmann Benjamin H.3ORCID,Westover M. Brandon1245

Affiliation:

1. Department of Neurology Harvard Medical School Boston Massachusetts USA

2. Department of Neurology Beth Israel Deaconess Medical Center Boston Massachusetts USA

3. Department of Neurology Mayo Clinic Rochester Minnesota USA

4. Department of Neurology Massachusetts General Hospital Boston Massachusetts USA

5. McCace Center Boston Massachusetts USA

Abstract

AbstractStudies suggest that self‐reported seizure diaries suffer from 50% under‐reporting on average. It is unknown to what extent this impacts medication management. This study used simulation to predict the seizure outcomes of a large heterogeneous clinic population treated with a standardized algorithm based on self‐reported seizures. Using CHOCOLATES, a state‐of‐the‐art realistic seizure diary simulator, 100 000 patients were simulated over 10 years. A standard algorithm for medication management was employed at 3 month intervals for all patients. The impact on true seizure rates, expected seizure rates, and time‐to‐steady‐dose were computed for self‐reporting sensitivities 0%–100%. Time‐to‐steady‐dose and medication use mostly did not depend on sensitivity. True seizure rate decreased minimally with increasing self‐reporting in a non‐linear fashion, with the largest decreases at low sensitivity rates (0%–10%). This study suggests that an extremely wide range of sensitivity will have similar seizure outcomes when patients are clinically treated using an algorithm similar to the one presented. Conversely, patients with sensitivity ≤10% would be expected to benefit (via lower seizure rates) from objective devices that provide even small improvements in seizure sensitivity.

Funder

National Science Foundation

National Institute of Neurological Disorders and Stroke

Epilepsy Foundation

Publisher

Wiley

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1. Patient-reported outcomes in neuro-oncology;Current Opinion in Oncology;2024-07-05

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