Large Portion of Newly Diagnosed Epilepsy Patients Go Untreated

Pauline Anderson

December 04, 2018

NEW ORLEANS — Despite the wide availability of anti-epileptic drugs (AEDs), almost one third of patients who are newly diagnosed with epilepsy do not receive immediate treatment, new research from Australia shows.

Dr Zhibin Chen

Up to 90% of people with epilepsy who live in resource-poor countries do not receive AED therapy. This "treatment gap" is generally attributed to socioeconomic factors. Little is known regarding the extent to which epilepsy patients are untreated in high-income countries.

"Understanding treatment decisions in these patients and the reasons behind these decisions is crucial for optimal care," lead author Zhibin Chen, PhD, postdoctoral biostatistician, Department of Medicine, University of Melbourne, and Department of Neuroscience, Monash University, Australia, told Medscape Medical News.

The study was presented here at the American Epilepsy Society (AES) 2018 Annual Meeting.

Treatment Gap?

To determine whether there is an epilepsy treatment gap in Australia, researchers prospectively recruited adult patients who attended first seizure clinics of publicly funded hospitals in Western Australia between May 1, 1999, and May 31, 2016. These clinics assess and follow patients with new-onset seizures who are referred from primary care and emergency departments.

Australia's tax-funded healthcare system provides universal coverage for all public hospital admissions, outpatient attendance, investigations, and treatment.

The final cohort included 610 adult patients with newly diagnosed epilepsy. Of these, 61% were male. The median age at diagnosis was 40 years, and the median duration of follow-up was 5.7 years.

All study participants were diagnosed with epilepsy on the basis of 2014 International League Against Epilepsy diagnostic criteria. About 12.1% were diagnosed with generalized epilepsy, and 61.2% were classified as having focal epilepsy. For 26.7% of patients, epilepsy was unclassified.

At each follow-up visit, the investigators reviewed medical records to determine the proportion of untreated patients and the reasons for not starting treatment. They compared treated and untreated patients with respect to sociodemographic factors and neuroimaging and electroencephalography (EEG) findings.

The results showed that 31.0% of patients were not prescribed AEDs at diagnosis. Of these patients, 16.4% were not offered treatment by neurologists, and 14.6% declined treatment.

"These rates were higher than expected," noted Chen.

The most common reason for neurologists not offering treatment was the presence of seizure-precipitating factors (29%).

"Some patients with epilepsy only have seizures in the context of specific external or lifestyle factors," explained Chen. "In our cohort, the most common factors were sleep deprivation, stress, and alcohol excess."

For such patients, it may be reasonable for the neurologist to recommend avoiding these lifestyle factors rather than immediately starting AEDs, he said.

Chen noted that 212 of the 610 patients had seizures that were clearly related to external/lifestyle factors, but only 34 of these patients did not receive AED treatment. For 22 of these patients, neurologists did not recommend AEDs; the remaining 12 patients opted to adjust their lifestyle rather than take medication.

"There is a paucity of evidence as to the long-term success of immediate therapy compared to recommending the patient avoid precipitants," said Chen.

Twenty-three percent of patients were not offered AED treatment because they had only experienced a single seizure. In these cases, the neurologist's decision not to initiate AEDs was likely based on evidence from randomized controlled trials that show that treatment after one seizure does not affect long-term outcomes, said Chen.

For 18% of patients, treatment with AEDs was not initiated because clinicians decided to conduct further investigations, such as neuroimaging.

Unconvinced Patients

The most common reason patients declined AED treatment was that they were unconvinced of the need for it (39%).

"In real-world clinical practice, even with clearly explained risks, some patients might still think the potential harm outweighs the benefits, especially if they have minor or infrequent seizures," said Chen.

Some patients (15%) declined treatment because of seizure-precipitating factors; others (8%) did so because of potential adverse effects. None of the patients cited drug cost as a reason.

The study identified subgroups of patients who were more likely to receive AED treatment. Among these were older patients. For each year increase in age, the odds of commencing treatment increased by 3%.

Older patients may be more likely to receive treatment because they tend to be taking medications for other conditions and are less reluctant than younger patients to start AED treatment, said Chen.

Another subgroup more likely to receive treatment were those of lower socioeconomic status.

Those whose seizures occurred with greater frequency were also more likely to start treatment. Chen said that this is not surprising, given the known increased risks for future seizures with more seizures or epileptogenic lesions.

The researchers found no significant links between seizure type and treatment decisions.

During follow-up, 118 of the initially untreated patients (62.4%) began AED treatment. Among this delayed-treatment group, 37 patients started treatment outside of clinic visits. For these patients, the researchers could not ascertain the reason for initiation of treatment.

For the remaining 81 patients, there was a median delay of 95 days from diagnosis to treatment initiation. The most common reason given for commencing treatment was experiencing additional seizures (89%).

"Epilepsy treatment decision making is a very complex process that requires neurologists to consolidate information from multiple sources, including seizure activity, diagnostic results, medical history, and the patient's lifestyle," said Chen.

"When patients have doubts about the need for treatment, it's important for neurologists to clarify any misunderstanding," he said.

Chen and his colleagues now plan to compare seizure outcomes for those patients who underwent treatment immediately, those whose treatment was delayed, and those who did not undergo treatment.

The management of epilepsy in the United States and Europe is similar to that in Australia, so "we believe most of our findings can be applied to these regions," said Chen.

Weighing Risks, Benefits

Commenting on the findings for Medscape Medical News, AES President Shlomo Shinnar, MD, PhD, professor, Departments of Neurology, Pediatrics, and Epidemiology and Population Health, Albert Einstein College of Medicine, New York City, said the results reflect clinicians' knowledge of seizure management and do not suggest a lack of access to care.

Numerous studies, he said, have made it clear that waiting until the second seizure before starting treatment does not affect long-term outcomes.

However, a number of factors weigh into the decision as to when to start AED therapy, including whether the patient is a child or an adult, what they do for a living, what kind of environment they live in, and EEG results, said Shinnar.

"I frequently do not treat children after one or two seizures. For adults, I don't treat after one, and after two, I typically do," he said.

Clinicians have to ask themselves whether the risk of having a seizure is higher than the "not insignificant risk and morbidity of chronic AED therapy. So you have to weigh what those risks and benefits are," said Shinnar.

The study was supported by a grant from UCB Pharma. The study investigators have disclosed no relevant financial relationships.

American Epilepsy Society (AES) 2018 Annual Meeting. Abstract 3.421, presented December 3, 2018.

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