Abstract
Epileptologists love terminology. The IOM report (1), Dr. Sirven's commentary (2), and the original publication in Epilepsia (3) have done well to outline why. Not only do our terms influence our own actions, they also influence the actions and thoughts of our colleagues, patients and the communities that they interact with. Consensus must be reached on the terms that we use so that we can clearly and concisely communicate somewhat abstract concepts to stakeholders of all backgrounds and education levels in order to advance the cause of epilepsy education, treatment, and cure.
Another relevant and recent example that parallels the merits and trials of the Korean experience is the most recent revised terminology and concepts for organization of the epilepsies from the ILAE (4). While this was an attempt to reflect the most recent scientific advances in our terminology, it has instigated a conversation, largely outside of the literature, about whether meaning was lost when the old terminology was dropped; however, as Dr. Sirven points out, if these old terms provide less precision, this is simply not a good enough reason to keep them.
In the spirit of this discussion, I take issue with the term “seizure disorder”. While used interchangeably with “epilepsy” in clinical practice and possibly carrying less stigma, it is, at best, ambiguous (e.g., seizure versus seizure mimic, unprovoked versus provoked) and misleading (e.g., seizures as the only symptom). The IOM report avoids using this term because “there are a number of conditions that result in seizures that are not epilepsy” (p. 32). Is this just semantics or tautology? I would argue that there are broader treatment implications, even for those with a confirmed diagnosis of epilepsy. We are no longer in an age where seizure control is the only consideration for epilepsy treatment. Any plan for intervention must also carefully weigh the costs of seizure control across a broad set of clinical and non-clinical domains: neurological (e.g. hemiparesis, somnolence), cognitive/behavioral (e.g. psychomotor slowing, decreased attention), psychological (e.g. mood disorders), non-neurological (e.g. hepatic, hematologic, and immune response), psychosocial (e.g. stigma, disability, quality of life), and economic (e.g. costs of care for the patient and the system). Most subspecialty providers are aware of these other domains and consider them, but they have not been rigorously studied in patients with epilepsy and, while efforts have been made towards consensus, there is little agreement on how to measure most of them (5). Nevertheless, we must lead the way in providing complete care for our patients by using a term that, for better or worse, has come to be associated with more than “just seizures”.
Conflicts of interest: None.
Footnotes
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