Introduction from Dr Markus Reuber, editor-in-chief of Seizure
Health educators often highlight the message that epilepsy is a disease that can affect anyone around the world. This message may be communicated with the best of intentions – for instance in the hope that it will reduce the significant stigma associated with epilepsy – a problem which can be more disabling than the seizures themselves (1). However, what this message fails to highlight is that epilepsy is not evenly distributed among the rich and the poor – neither globally nor in individual countries. Of the 60 million people with epilepsy worldwide, 80% live in lower or middle income countries (LMICs). Although two thirds of all presentations of epilepsy should be “controllable” with optimal antiepileptic drugs treatment, almost three quarters of individuals living in rural regions of LMICs receive inadequate or no antiepileptic drug treatment at all (2).
In the face of the social, economic and medical challenges reflected by these basic facts, many of the scientific debates about the relative pros and cons of one advanced epilepsy treatment over another that are conducted in scientific journals like Seizure seem somewhat less relevant. Of course, progress at the cutting edge of medical science is still urgently needed and should not be disparaged. However, we must not lose sight of problems like the massive epilepsy treatment gap (the difference between those with a diagnosis of epilepsy and those receiving treatment for it) – especially as means of tackling some of these problems are within our grasp.
My Editor’s Choice from the current issue of Seizure is an article by Chintan Prajapati et al. describing one low cost means of reducing the treatment gap (3). In their article, the authors describe the outcome of single therapeutic encounters between individuals with epilepsy living in rural districts of India and clinicians making diagnoses and providing treatment advice in epilepsy outpatient clinics on the “Lifeline Express” (LLE). The LLE is a train service run by the Impact India Foundation, an Indian non-governmental organisation, which takes medical specialists to the most inaccessible Indian communities (4). This service does not just deal with epilepsy but with a wide range of medical disorders. One thing it cannot offer is regular follow-up. The vast majority of the patients seen will only receive treatment advice on one occasion, and then have to find ways of following this advice without further support from the experts they have met on the LLE. The study shows that, in comparison with patients with epilepsy seen (and followed up) by some of the LLE doctors at AIIMS, a national specialist neurology centre in New Delhi, the outcome of those who received advice on the LLE is worse: at least two years after the initial contact 72% of the LLE versus 87% of the AIIMS patients were still taking antiepileptic drugs, 22% versus 6% had discontinued medication against medical advice and 7.5% versus 2.8% had died. However, more importantly, the single contact with an expert on the LLE had reduced the epilepsy treatment gap from 49% at first contact to 22% at follow up. Of course there is so much more to do – but facilitating a single contact with an epilepsy expert may be a good way to start!
(1) Jacoby A, Snape D, Baker G. Epilepsy and social identity: the stigma of a chronic disorder. Lancet Neurology. 2005;4,171-78.
(2) Espinosa-Jovel C, Toledano R, Aledo-Serrano Á, García-Morales I, Gil-Nagel A. Epidemiological profile of epilepsy in low income populations. Seizure 2018;56:67–72.
(3) Prajapati C, Bhushan Singh M, Padma Srivastava MV, Sreenivas V, Goyal V, Shukla G, Vishnu VY, Gursahani R, Patterson V, Bajpai S, Jain P. Comparing long-term outcomes of epilepsy patients from a single-visit outreach clinic with a conventional epilepsy clinic: A cross-sectional observational study from India. Seizure 2019;67:5-10
(4) Impact India Foundation - NGO in India: An International Initiative Against Avoidable Disablement. Available from: https://www.impactindia.org/lifelineexpress.php#content-start