The Clinical Potential of the SUDEP-3 Inventory


Maromi Nei, MD, and Michael R. Sperling, MD, shared their insight on the novel inventory tool for predicting sudden unexpected death in epilepsy and their recently published work.

Maromi Nei, MD, vice chair of faculty affairs, and director, Epilepsy Fellowship Program, Jefferson University

Maromi Nei, MD

Michael R. Sperling, MD, Baldwin Keyes Professor of Neurology, Jefferson University

Michael R. Sperling, MD

Recently published literature has highlighted the potential of a newly proposed inventory tool for predicting sudden unexpected death in epilepsy (SUDEP), with the data showing not only the limitations of the currently used SUDEP-7 inventory but better prediction of SUDEP with this novel, 3-item tool.

Dubbed SUDEP-3, the novel tool includes weighting scoring for 3 items—generalized tonic-clonic seizures (GTCS) within the last year, any seizures within the last year, and intellectual disability—which can result in a score from 0 to 4. The data from this study showed resulting scores from SUDEP-3 that were significantly able to predict SUDEP (P <.001), accounting for 28% of its variance, which outperformed the 7-item SUDEP inventory. Notably, for each additional point gained on the SUDEP-3, the odds of SUDEP increased by 180%, compared to the per point odds increase of 40% associated with the SUDEP-7. In receiver-operating characteristic (ROC) analyses, the area under the curve (AUC) was 0.75 for the SUDEP-3 compared with 0.66 for the SUDEP-7. Model quality was also deemed better for the SUDEP-3.

To find out more about this new inventory and its potential, as well as the still-remaining challenges of implementing something like this into clinical practice for patients with epilepsy, NeurologyLive inquired with 2 of the study authors. Maromi Nei, MD, vice chair of faculty affairs, and director, Epilepsy Fellowship Program, Jefferson University, and Michael R. Sperling, MD, Baldwin Keyes Professor of Neurology, Jefferson University, shared their insight after working on the tool.

NeurologyLive: What issues for the clinical neurology/epileptology might the SUDEP-3 improve?

Maromi Nei, MD: We believe that this inventory provides a simple way to identify patients at highest risk of SUDEP. Additionally, it can also help track whether there is a reduction in the patient’s SUDEP risk over time, since the scoring is dynamic and does not depend upon the duration of epilepsy (as does the SUDEP-7).We hope that using this inventory may help clinicians counsel patients regarding their individual SUDEP risk. Such information may also help to highlight the importance of medication adherence and support consideration of using other means to achieve seizure control, such as epilepsy surgery, when appropriate, to lower SUDEP risk.

Michael R. Sperling, MD: For many people, SUDEP is the most feared risk associated with epilepsy. the SUDEP-3 is better targeted than the other inventory (SUDEP-7) and offers a simple and rapid way of identifying those people at greatest risk during a routine examination. This then allows us to know which patients need a more aggressive treatment approach and counseling. For example, physicians should counsel people with high SUDEP risk about epilepsy surgery if they have failed to respond to two appropriate drugs, and if surgery is not appropriate should consider either trying new antiseizure medication or neurostimulation methods such as DBS, RNS, or VNS. Other interventions might also be advised. For example, we know that most people who die of SUDEP sleep alone. One might consider having a seizure alarm in the bedroom so that other household members can immediately attend to someone having a seizure. While this is not certain, it is possible that stimulation by another person may foster resumption of breathing, since apnea is common with seizures and may precede SUDEP. This and other interventions require further study, however.

What still needs to be done to get this new inventory—or some version of it—into clinical practice?

Maromi Nei, MD: While this inventory was valid in our cohort, additional validation in other, particularly larger groups, is also needed. We hope that this tool will be useful for both researchers and clinicians. In SUDEP research, a simple and reliable indicator of SUDEP risk is needed, and we hope this inventory may serve that purpose. Reliable differentiation of low versus high-risk SUDEP patients may help in the identification of specific SUDEP biomarkers and aid in the design of prospective studies, which may ultimately lead to specific interventions that could prevent SUDEP.

Michael R. Sperling, MD: To get it into clinical practice, physicians must be educated about it. The American Academy of Neurology could consider recommending SUDEP screening as part of the routine exam in people with epilepsy as a quality control measure.

Transcript edited for clarity.

Rasekhi RT, Devlin KN, Mass JA, et al. Improving prediction of sudden unexpected death in epilepsy: From SUDEP-7 to SUDEP-3. Epilepsia. Published online June 4, 2021. doi: 10.1111/epi.16928.
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