The Department of Informatics at UCI hosted a virtual research seminar titled “Was That a Seizure? Diagnosis in Lived Experience and Medical Practice” in January. The seminar, which was presented by President’s Postdoctoral Fellow Dr. Megh Marathe, focused on the importance of individualized healthcare for people with epilepsy.
The symptoms of seizures are typically thought of as moments when a person drops to the ground, convulses and loses consciousness. While that may be true at times, seizures can manifest in different ways depending on the person. According to Marathe, seizures may not necessarily correlate with these behaviors and can often go undiagnosed for a long period of time.
“Epilepsy messes with our notions of normal and abnormal because it’s one of the few conditions where a person appears perfectly normal for the most part except during short seizures,” Marathe said.
Marathe defined epilepsy as “a disability and chronic illness categorized by recurrent and unpredictable seizures.” They also stressed that epilepsy is an incurable condition and that 30-40% of epilepsy patients continue to have seizures despite medical treatment.
During the seminar, Marathe discussed the partnership between doctors and patients to use an “expedient approach” when classifying seizure and non-seizure events. The expedient approach is defined as choosing a treatment pathway that prioritizes both a patient’s personal interests and their health. This approach attempts to best maintain a patient’s independence, social relationships and career — all of which could be disrupted by an epilepsy diagnosis or disruptive side effects caused by various medications.
The distinction between seizure and non-seizure events established between patients and their doctors can have serious effects on all aspects of a patient’s life, including their well-being, healthcare, source of income and independence. For example, the Department of Motor Vehicles (DMV) may revoke or suspend the driver’s license of someone with epilepsy if they believe it causes a safety risk. Moreover, frequent seizures may result in inconvenient career changes or the inability to hold specific jobs for long, depending on the employer and nature of the job.
Since seizure symptoms for one patient might be largely different from the symptoms for another, the expedient approach focuses on the individual and environmental factors that contribute to seizure classification. Marathe said that independent factors must be taken into account when considering the age, comorbidities and medications of the individual because seizures manifest differently depending on the person.
One of Marathe’s main focuses in their research of seizure classification is to “prevent difference from turning into discrimination.”
Those diagnosed with epilepsy have had a history of being mistreated, including involuntary confinement and sterilization. Additionally, there have been a number of statutes that deny those with epilepsy the right to marriage or mark an epilepsy diagnosis as grounds to annul a marriage.
Marathe believes distinguishing between “usual” and “unusual” epileptic seizures instead of “normal” and “abnormal” is important.
“The very act of calling an event, process or person normal or abnormal creates the broader categories of normal versus abnormal entities and [leads] to division between [the two groups],” Marathe said.
According to Marathe, seizure event classification should be dependent on the individual aspects of the patient including age, mobility, medication and environment. Therefore, Marathe’s research focuses on creating a computational intervention that uses the expedient approach and revises its interpretation as new information is acquired. Ideally, an algorithm would be able to classify the severity of seizure events individually, similar to how doctors revise their interpretations based on multiple aspects of a patient’s life.
One vital diagnostic test for epilepsy is the electroencephalography scan, more commonly known as an EEG. According to the Epilepsy Foundation, an EEG scan is administered by placing electrodes on a patient’s scalp where the brain’s electrical activity is interpreted as either normal or abnormal seizure activity.
When reviewing EEG scans, a doctor might take the expedient approach and determine whether a particular instance qualifies as a seizure based on the best interests of the patient, such as discounting possible seizure events to avoid aggressive treatment routes.
The amount of seizures that occur during the EEG scan often determines the level of care given to a patient — more frequent seizures constitute a more intense treatment route. Marathe said that some medications used to treat epilepsy can cause side effects that are more detrimental to a patient’s health than if they avoided the medication entirely.
Another one of Marathe’s primary goals in their research is to foster inclusion of people with an epilepsy diagnosis within marginalized groups, such as women, BIPOC and the LGBTQ+ community. This research focus works toward a computational seizure detection system that would implement an expedient approach when interpreting EEG scans and recommending treatment.
Shakira Noriega is a STEM Contributing Writer for the winter 2022 quarter. She can be reached at email@example.com.