Study delivers insights for decision treatment support in people recently diagnosed with epilepsy
Monash research from the Department of Neuroscience at the Central Clinical School has found that the use of technology systems, like machine learning to support clinicians in treatment decision making, are perceived as acceptable by people who have recently received a diagnosis of epilepsy.
First author, Dr Sandy Reeder, a Senior Research Fellow from the Brain Recovery and Rehabilitation Group, said, “People with epilepsy were open to machine learning being a part of their medication selection. Most want to know more about it, and be included in the medication decision making process with their neurologist.”
Epilepsy is a neurological disorder characterised by seizures caused by a disruption of electrical activity in the brain. Each year, globally five million people are estimated to receive a diagnosis of epilepsy. The most effective management for newly diagnosed people is the use of anti-seizure medications.
However, for many people who have received a diagnosis of epilepsy, treatment to resolve their seizures and achieve what is referred to as “seizure freedom” is not as easy as it might sound. At this point in time, clinicians are still not able to predict exactly which treatment will work for each patient. This is because every person is different and therefore has a different response. In some cases, patients may need a combination of multiple medications or may not respond to any medications and need other types of treatment like surgery or dietary intervention.
No reliable surrogate biomarkers exist for treatment response. Instead, people with epilepsy currently “play a waiting game” over a lengthy period of time to determine whether prescribed treatments are effective. Few studies have examined the issues in depth faced by people with epilepsy during this waiting period.
The research team interviewed people recently diagnosed with epilepsy to understand their experiences while waiting for treatment to achieve seizure freedom uncovering four major themes. Dr Reeder said, “the findings show that there is an urgent need to help people newly diagnosed with epilepsy in terms of their mental health, safety, and the immediate negative impacts on their independence, work / study, and really all aspects of their life.”
Senior author of the study, clinician researcher Professor Patrick Kwan, said that “one of the best parts of this study was having a different type of research opened up to us apart from our routine (quantitative) approach, i.e. the powerful world of qualitative research. The quotes from the patients still give me goosebumps every time I read them, and remind me of the gravity of the diagnosis.”
The findings provide information for clinicians to develop appropriate responses with future patients who may go on to have mental health issues or need support in finding and understanding information about their condition. The team now hope that further research will go into developing interventions, other than general supportive interventions currently available, to help prevent or reduce the negative impacts which occur with waiting.
Last Monday marked International Epilepsy Day was held on Monday 13 February, a joint initiative of the International Bureau for Epilepsy and the International League Against Epilepsy, This year’s focus is to #StampOutStigma and generate awareness through messages using #EpilepsyIs, components of the new WHO Intersectoral Global Action Plan on Epilepsy and other Neurological Disorders.
Reference:
- Sandra Reeder, Emma Foster, Swarna Vishwanath, Patrick Kwan. Experience of waiting for seizure freedom and perception of machine learning technologies to support treatment decision: A qualitative study in adults with recent onset epilepsy. Epilepsy Research, 2023; 190: 107096, https://doi.org/10.1016/j.eplepsyres.2023.107096
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