Epigraph Vol. 21 Issue 2, Spring 2019

“Unparalleled assessment” of the global burden of epilepsy highlights yawning treatment gap in low-income countries

While the prevalence of epilepsy has not changed over the past 25 years, lower-income countries are still saddled with a large treatment gap that results in higher levels of death and disability. The conclusions are part of a rigorous global analysis published in the February 14 issue of Lancet Neurology.

Using data from the Global Burden of Diseases, Injuries, and Risk Factors Study, collaborators charted the prevalence of idiopathic epilepsy—epilepsy without a known cause—between 1990 and 2016. They also analyzed changes in mortality rates and the burden of disability from epilepsy around the world.

Lower income, higher burden

Ettore Beghi
Ettore Beghi

Between 1990 and 2016, they found no significant increase in the prevalence of idiopathic epilepsy, but a significant decrease in mortality rates and disability-adjusted life years (DALYs), a measure of years lost due to ill health, disability or early death. Overall, mortality rates dropped by 24.5% and DALYs by 19.4%.

The data show these improvements were generally isolated in higher-income countries, however. Lower income regions of the world, particularly sub-Saharan Africa, bore distinctly higher burdens of death and disability.

The results highlight the need to continue to reduce the treatment gap in lower-income countries, said Ettore Beghi of Milan’s IRCCS-Mario Negri Institute for Pharmacological Research and first author of the report. “The reduction of DALYs and deaths [in higher-income countries] can be explained by the increasing use of antiepileptic drugs,” he said, “which can be accompanied by a reduction of the burden of the disease in terms of recurrence of seizures and premature mortality.”

David Thurman
David Thurman

“This is a very impressive and important piece of work,” said David Thurman, adjunct professor of neurology at Emory University School of Medicine, who was not affiliated with the study. “It’s statistically rigorous and sophisticated – they’ve done a monumental synthesis of data from around the world addressing epilepsy prevalence as well as incidence, looking at disability and mortality and integrating all of that.”

Epilepsy by the numbers

The study estimated the 2016 global prevalence of active idiopathic epilepsy and secondary epilepsy combined at 45.9 million. Idiopathic epilepsy has no known cause; secondary epilepsy occurs as a result of injury, infection, stroke or illness. Of the 45.9 million, 24 million (52.3%) had active idiopathic epilepsy.

The World Health Organization estimates the global lifetime prevalence of epilepsy at more than 50 million. WHO also estimates that between 4 and 10 per 1,000 people have active epilepsy, which translates to a prevalence between 30 million and 75 million, based on current world population numbers.

Similarly, a 2010 meta-analysis estimated a lifetime prevalence worldwide of 65 million, with cases of active epilepsy at about 32.8 million.

In a recent Global Burden of Disease report on the burden of neurological diseases, idiopathic epilepsy accounted for 5% of all neurological DALYs and 1.3% of deaths and ranked fifth in prevalence after stroke, migraine, dementia, and meningitis. In southern sub-Saharan Africa, it ranked second.

Rank of epilepsy among neurological disorders

While the authors called the decreases in mortality and DALY rates “encouraging,” they noted that the changes were linked to sociodemographic status, which should stimulate more action in lower-income areas. (see chart below)

Access to care is key

 “The success of reducing the burden of idiopathic epilepsy relies mostly on access to treatment,” the authors wrote. “Health service planners and providers also need to be aware that patients with epilepsy are more often poor and marginalised because of stigma, requiring a greater effort to reach them than might be the case for most other diseases.”

“It’s clear that the burden of epilepsy is less in regions of the world with good health care and access to specialty care,” said Thurman. “The lesson here is that there is much more work to be done in providing quality care for epilepsy in all regions of the world, particularly low-income countries.”

A February 16 editorial in Lancet  references the study and reiterates that 80% of people with epilepsy live in lower-income countries, where access to care, stigma and misinformation contribute to a treatment gap that yawns as wide as 90% in some countries.

The editorial concludes: “Epilepsy must become a global health priority, and there lies an immediate imperative to maximise the quality of life for people with epilepsy until it is curable. A united research programme and global campaigns to prevent infections and head trauma that cause seizures, expand access to essential medicines and safe surgery, and defend the civil rights of people with epilepsy, wherever they live, are important steps in this direction.”

Global Prevalence of idiopathic epilepsy, 2016

Age standardized prevalence of idiopathic epilepsy per 100,000 population, by sequelae and SDI quintile. Severe epilepsy = more than one seizure per month. Less severe epilepsy = 1 to 11 seizures per year or no seizures in the past year but still fulfills criteria for active epilepsy. SDI = sociodemographic index.