Services and support addressing the psychosocial and emotional distress associated with a diagnosis of epilepsy are necessary to improve patient outcomes, Australian researchers say.
A study of 190 adults from the Sydney Epilepsy Incidence Study to Measure Illness Consequences (SEISMIC) found most patients (76%) reported emotional difficulties within the first month after diagnosis.
While that level of distress eased over the following year, 50% of patients were still impacted at a 12-month follow-up.
The study found lower education, economic hardship, multiple antiepileptic medications and greater disability at the time of diagnosis were associated with greater overall disability at 12 months.
Experiencing severe or extreme emotional difficulties at baseline and perceived stigma were independent predictors of greater emotional problems at 12 months.
“Our study suggests that interventions to manage the psychological sequelae of epilepsy and other external stressors, such as economic hardship and perceived stigma, may be needed to improve adjustment and clinical management of this common condition,” the researchers said.
“Educational videos and pamphlets helping epilepsy patients achieve correct understanding of the disease and peer support groups enhancing social supports may reduce perceived stigma.”
Co-author Professor Maree Hackett, from the George Institute for Global Health, told the limbic there was definitely capacity for clinicians to refer people to online resources or help address their mental health needs.
“As being distressed at baseline is a predictor of being distressed 12 months later, it’s important to do something early on.”
“And it’s the same with economic hardship. If a clinician know that the person in front of them is unlikely to be paying their utility bills or borrowing money to come in and receive care, then that potentially is a higher risk patient.”
“One of the things we’ve considered is whether you can in effect normalise the emotional response in people with an acute event such as stroke or new diagnosis such as epilepsy.”
“It maybe that by explaining to patients that many people will be worried by this diagnosis and providing early education that clinicians could help mediate the psychological response to the diagnosis.”
The study found about a quarter of the study group also reported difficulties with work and concentration. Difficulties with household responsibilities, community activities, and learning a new task were also reported.
The researchers said their findings regarding disability were similar to other evidence in people with epilepsy.
“However, the frequency of our participants reporting disability was lower than in people with spinal cord injury, multiple sclerosis, Parkinson`s disease, mental illness, and substance abuse,” the study said.