Respondents who have experienced focal seizures were less likely to feel their condition is under control, more likely to experience negative quality of life
A new Health Union survey reveals people living with epilepsy who experience focal onset seizures often have a more complex treatment journey than those who have never experienced focal seizures, including less treatment control, a larger array of treatment options used and more negative quality of life. The inaugural Epilepsy In America survey illuminates the perspectives and experiences of people living with epilepsy.
These findings also support and fuel content and engagement for the recent launch of EpilepsyDisease.com, Health Union’s 38th condition-specific online health community.
Epilepsy is a condition in which nerve activity in the brain is disturbed, which causes seizures. According to the Epilepsy Foundation, the cause of epileptic seizures is often unknown, but they may occur due to a genetic disorder, be acquired from a brain injury like trauma or a stroke, or stem from a number of brain structure, immune or metabolic causes.
Seizures are typically categorized by their onset, or where they begin in the brain, with generalized onset and focal onset seizures being the two major types. Generalized onset seizures occur when there is widespread seizure activity in both hemispheres of the brain; typical subsets include tonic-clonic (formerly grand mal) and absence (formerly petit mal) seizures. Focal seizures happen when seizure activity begins in one area or group of cells in one hemisphere of the brain; typical subsets include focal seizures with awareness (formerly simple partial) and focal seizures with impaired awareness (formerly complex partial).
Among Epilepsy In America survey respondents, 64% have had focal seizures and 80% have experienced generalized seizures, while 52% have experienced both. Survey findings reveal that respondents who have experienced focal seizures, which has been the focus of much clinical research in recent years, have significantly different patient journeys than the 36% who have never experienced focal seizures, including treatment experience and quality of life.
Findings reveal that people with epilepsy who experience focal seizures leverage – whether out of need or by choice – a larger array of treatment options. Respondents living with focal seizures were more likely than those who aren’t to currently be using prescription medications. They were also more likely to use various alternative therapies, including vitamins or supplements, exercise or yoga, meditation and music therapy.
In general, finding treatments that work can be challenging for people experiencing focal onset seizures. Occasionally, surgery becomes a possibility for people living with focal onset seizures. This was the case for EpilepsyDisease.com patient advocate Stacia Kalinoski, who was diagnosed with temporal lobe epilepsy with secondarily generalized seizures.
“Once I got to a therapeutic level on my medications, the tonic-clonic seizures mostly ended, but multiple doses of three different anti-epileptic drugs couldn’t control my temporal lobe seizures,” Kalinoski said. “I was frustrated but tried hard not to lose hope. A focal seizure ultimately ended my career, but it led me to brain surgery, which I’m immensely grateful to have had done.”
Three in 10 respondents who have experienced focal seizures indicated their epilepsy is under control with their current treatment plan, compared to half of respondents who have never experienced them. In fact, a quarter of respondents who have had focal seizures said they have gone at least two years seizure-free at some point; meanwhile, nearly half of respondents who haven’t experienced focal seizures have ever gone at least two years without a seizure.
The varying patient journeys of those who have experienced focal onset seizures compared to those who haven’t can lead to different clinical care paths. Specifically, one-third of respondents who have experienced focal seizures said the primary healthcare professional they see for their epilepsy is an epileptologist – a neurologist specializing in epilepsy care – compared to 13% of respondents who haven’t experienced a focal seizure. They are also more likely to have participated in epilepsy clinical trials.
Respondents who have had focal seizures also identified themselves as experiencing a more negative quality of life. Specifically, they were more likely to say the stigma associated with epilepsy has affected their lives. They were also more likely to say they have experienced discrimination, isolation and reduced productivity at work.
“Epilepsy is an immensely varied condition, and people living with epilepsy sometimes find themselves without the detailed information, support, and validation they need,” said Olivier Chateau, Health Union’s co-founder and CEO. “EpilepsyDisease.com aims to provide these individuals with a safe, supportive environment as they manage a condition that often includes an array of challenging symptoms and quality of life implications.”
The inaugural Epilepsy In America survey, which was fielded from Jun. 10 to Aug. 26, 2021, included responses from 415 people living with epilepsy. Additional survey results may be available upon request. More information about living with epilepsy can be found on EpilepsyDisease.com.
About Health Union
Health Union, with the recent acquisition of WEGO Health, maintains the largest team of experts, patient advocates and healthcare leaders dedicated to social health. The company encourages social interactions that evolve into valuable online health conversations, helping people with chronic conditions find the information, connection, and validation they seek. Health Union does this by creating condition-specific online communities – publishing original, daily content and continuously cultivating social conversation – to support, educate and connect millions of people with challenging, chronic health concerns. Health Union’s growing portfolio of condition-specific communities includes 38 online health communities, including LungCancer.net, ParkinsonsDisease.net, MultipleSclerosis.net and Migraine.com.
SOURCE Health Union