4 Common Causes of Delayed Epilepsy Diagnosis
The goal of any physician is to determine the underlying cause of any patient complaint quickly and efficiently. For those with epilepsy, however, it is estimated that over a third of patients experience a delay in obtaining a diagnosis that ranges from a few months to several decades 1. The more quickly a person with epilepsy is put on anti-seizure medications, the more likely the treatment can minimize the potential negative effects of recurrent seizures. The faster a person with medically refractory epilepsy can be evaluated for possible resective surgery, the greater the chances of avoiding long term complications from epilepsy including morbidity and death. Thus, the important question is: what is causing these delays?
Recent research sought to answer this question by thoroughly examining the published studies on the topic1. After looking at the literature, these researchers have highlighted four areas that may prevent a timely diagnosis.
- Patients not seeking out treatment. This is the most common delay reported, in which patients or caregivers fail to recognize that seizure events may require medical attention. This can be due to patients assuming events are caused by something else (like normal developmental or aging issues), patients feeling uncomfortable bringing up symptoms to their physicians, or patients missing events such as those that occur during sleep.
- Physicians not referring appropriately. For patients that do seek treatment, delays can occur when physicians misdiagnose seizure symptoms as other disorders, such as dementia, syncope, TIA, panic attacks, or even reactions to family or behavioral issues. When these types of delays occur, patients report feeling dismissed or not heard, leading to a lack of trust in their medical care. Although not directly mentioned by these researchers, physician referral delays may be exacerbated by a general practitioner’s lack of awareness of the severe impact of (even infrequent) recurrent seizures on a patient’s health, or a fear of broaching the topic of more invasive procedures such as brain surgery.
- Scheduling delays. With a limited number of specialists, especially in more rural or underserved areas of the country2, it can take a significant amount of time to get in to see neurologists that treat epilepsy. According to the study, the delay was a few weeks to a month, with the median delay being around 12 days.
- Disorganized diagnostic pathways. The final category defined by the researchers is categorized as “other.” Other seems to catch all of the complexity of the medical system – multiple healthcare providers overseeing care, potentially starting antiepileptic medications before a formal diagnosis is made, delays in coding the disease, and difficulties of the diagnosis itself.
The typical symptoms and risk factors associated with delays were primarily seen in lower impact seizures, or those that are either nondisruptive or have nonmotor symptoms. In other words, patients that had less stereotypically seizure-like symptoms. The authors also note significant differences in timely diagnosis based on race and ethnicity, as well as socioeconomic factors that may be related to being located in more rural locations or lacking healthcare insurance.
The overall impact of a delayed diagnosis has not been fully researched, but it is known that under or untreated patients with recurrent seizures have an increased risk of negative outcomes3, highlighting the need to improve timely access to care. Research pinpointing where these delays occur can help both providers and patients by increasing awareness of where patients may fall through the cracks.
About the Author
Hans Klein, Ph.D., is the Manager of Scientific Publications for Stratus. Dr. Klein is a social neuroscientist by training and received his doctorate at the University of Texas at Dallas, where his research focused on the neural underpinnings of social cognitive deficits within schizophrenia spectrum disorders, as well as methods for improving measurement and research design.
- Alessi N, Perucca P, McIntosh AM. Missed, mistaken, stalled: Identifying components of delay to diagnosis in epilepsy. Epilepsia. 2021. doi:10.1111/epi.16929
- Dall TM, Storm MV, Chakrabarti R, Drogan O, Keran CM, Donofrio PD, et al. Supply and demand analysis of the current and future US neurology workforce. Neurology. 2013;81(5):470-8. doi:10.1212/WNL.0b013e318294b1cf
- Kalilani L, Faught E, Kim H, Burudpakdee C, Seetasith A, Laranjo S, et al. Assessment and effect of a gap between new-onset epilepsy diagnosis and treatment in the US. Neurology. 2019;92(19):e2197-e208. doi:10.1212/WNL.0000000000007448