Abstracts

Rationale: Functional seizures (FS, also known as psychogenic nonepileptic seizures (PNES)) are disabling paroxysmal neurological symptoms commonly associated with biopsychosocial stressors. Often, FS are initially diagnosed as epileptic seizures (ES), which are disabling paroxysmal neurological symptoms caused by hyperexcitable, hypersynchronous electrical activity. Due to the excess mortality in ES from Sudden Unexpected Death in Epilepsy (SUDEP) and other causes, there is a perception that accurately identifying FS is “good news” and the diagnosis may be related to patients as such. However, there is emerging evidence for similar excess mortality in FS that suggests a need to adjust the language around delivery of diagnosis. In this study, we used electronic health records from a large healthcare system to identify patients with FS who died and evaluated potential contributors to death.

Methods: Based on electronic health records, we identified patients over 12 years old who had a clinical encounter at any location of the University of Pittsburgh Medical Center with an International Classification of Disease Codes Version 10 diagnosis of FS (F44.5) with or without co-occurring ES (G40). Within each group, we evaluated the time from initial diagnosis until last follow up or death to calculate a standardized mortality rate (SMR). For patients with FS, we used chart review and public records to identify contributors to death.

Results: We identified 1,472 with FS only (79.9% female, age mean 35, IQR 25-48), and 597 with co-occurring seizures (73.5% female; age mean 39 IQR 28-52). There were 48 deaths in FS (SMR 1.97, CI: 1.45-2.63), and 12 deaths in co-occurring seizures (SMR 0.93, CI: 0.48-1.65). Of the 60 people who died, the contributors to death were identifiable in 39 (65%). The primary contributor to death met criteria for probable sudden unexpected in 7 patients (16%; of which only 3 had probable co-occurring ES). The remaining deaths were: 9 substance abuse-related, 5 inadequate management of medical conditions (e.g., cardiac arrest in uncontrolled metabolic syndrome), 14 severe conditions (e.g., metastatic cancer), 3 accidents, and 1 suicide.

Conclusions: The diversity of contributors to death in people with FS highlight the need for holistic care of seizures, mental health, and co-occurring conditions. While inappropriate benzodiazepines for prolonged FS can precipitate emergency intubation, no deaths were a direct consequence of FS and no deaths were a direct consequence of epileptic seizures in a person with co-occurring FS. The proportion of probable sudden unexpected death in this population was similar to that identified in studies of SUDEP. In many patients, FS occur when biopsychosocial stressors overwhelm the body’s capacity to adequately manage tensions. The overwhelming nature of these biopsychosocial stressors may be reflected by the rates of mortality associated with inadequately managed co-occurring conditions and maladaptive coping with substances.

Funding: