In a Health Union survey of more than 400 patients, those with focal seizures were more likely to say they’ve experienced discrimination, isolation, and reduced productivity at work compared with those without.
Findings from the inaugural Epilepsy in America survey from Health Union suggest that patients with epilepsy who experience focal-onset seizures have a more complex treatment journey than those without, headlined by less treatment control, a larger array of treatment options used, and worse quality of life.1
The survey conducted from June 10, 2021, to August 26, 2021, fielded responses from 415 people living with epilepsy. Among them, 64% had focal seizures, 80% had experienced generalized seizures, and 52% had experienced both. Whether by need or by choice, patients who had focal seizures were more likely to use the larger array of treatment options; as well as more likely to use various alternative therapies, including vitamins or supplements, exercise or yoga, meditation, and music therapy.
Focal-onset seizures, characterized by nerve activity that disturbs 1 area or group of cells in 1 hemisphere of the brain, can be even more difficult to treat because treatments can often fail. For every 10 respondents who experience focal seizures, 3 indicated that their epilepsy is under control with their current treatment plan compared with half of the respondents who never experienced them.
"Epilepsy is an immensely varied condition, and people living with epilepsy sometimes find themselves without the detailed information, support, and validation they need," Oliver Chateau, cofounder and chief executive officer, Health Union, said in a statement.
The presence of focal onset vs nonfocal-onset seizures can play a role into the clinical path of a patient, according to the results. In total, one-third of those who claimed they experience focal seizures said epileptologists were their primary healthcare professional compared with 13% of respondents who hadn’t experienced these seizures. Additionally, they also were more likely to have participated in clinical trials.
Focal seizures were also associated with worse quality of life, with these patients more likely to report that the stigma associated with the epilepsy has affected their lives. Notably, those who experienced these seizures were more likely to say they have experienced discrimination, isolation, and reduced productivity at work.
All told, these findings helped fuel the recent launch of EpilepsyDisease.com, Health Union’s 38th condition-specific online health community. "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," Chateau added.
The new site includes several different options and tools for patients with epilepsy, including educational resources on symptoms, diagnosis, treatment options, and mental health. There are additional tabs for caregivers of the disease, as well as questions on epilepsy and COVID-19.2