Epilepsy Research Gap or Implementation Gap?
Virtual Special Editions are collections of targeted papers curated by a Guest Editor. Here Professor Mamta Bhushan Singh, All India Institute of Medical Sciences, New Delhi (author of the Editor’s Choice article in Volume 67) talks about epilepsy research gap or implementation gap.
Lifeline Express: Epilepsy outreach clinics have been held on this train since 2009 (Prajapati et al 2019)
We periodically lament the wide epilepsy treatment gap that exists for millions of epilepsy patients worldwide. Of several steps that can reduce this gap, one often overlooked step is the conduct of appropriate research throwing light on mechanisms leading to the gap and probing ways in which it can be diminished. I browsed through titles of articles published in Seizure in the last decade looking for research that in my opinion had an immediate translational value relevant to improving access to care and reducing the treatment gap. Far more research in this area is urgently needed but also, what has already been demonstrated to be useful can be further tested in communities and scaled up if found useful. Spending resources on further belaboring poor QOL and stigma in untreated or poorly treated epilepsy patients may neither advance science nor provide succor to these persons. Concentrating instead on finding solutions that are scalable may be more rewarding. Seven articles that are relevant in this connection have already been put together in a previous VSE https://www.seizure-journal.com/content/Bridging_list
We have not envisaged the epilepsy care model as a single encounter between patient and doctor, leaving follow-up visits to be driven by pragmatism and availability, rather than any fixed schedule. Prajapati et el (2019) provide evidence that while such a care model is not perfect, it may be an effective tool for reducing the epilepsy treatment gap in communities with limited access.
There is a shortage of epilepsy care providing doctors. In such a situation, task shifting to the extent possible may free up the doctors’ time for patients. In a very interesting article, Eshiet et al (2019) describe a creative way to enlist pharmacists for educating patients and improving their perception about epilepsy. Hand holding epilepsy patients through the prolonged periods of their care can also be done using technology. Online epilepsy counseling as described by Miloševic et al (2016) appears to hold promise.
Another bane in the provision of care, especially in LMICs, is the neglect of epilepsy primary care. More resources seem to be lavished on DRE rather than bringing the millions who are as yet untreated, under the ambit of some treatment (Singh 2018). An investigation by Kumar et al (2018) into the appropriateness of patients presenting to a tertiary care hospital in New Delhi, India revealed that up to 40% of these patients could well have been managed in primary care. Reinforcing epilepsy primary care should not be postponed. It is an unmet need deserving immediate action.
In busy clinics, as is often the case in LMICs, remaining aware and alert to possibilities of error in both the contents of the prescription as well as the patient’s understanding of it is critical. Any additional arrangement that can be made to ensure that each patient walks out with a correctly written prescription and also that he understands each instruction written on the prescription is important. Murphy et al (2014) look into this aspect of care. On similar lines, wrongly attributing poor seizure control to DRE, without looking into other plausible reasons for a failure to achieve seizure remission has been reported by Asadi-Pooya et al (2013). This needs frequent reiteration as precious resources are wasted investigating patients where a simple review of clinical history may have provided better insight. Finally, the development of an evidence based SUDEP checklist by Shankar et al (2013) can serve as a valuable reminder for both doctors and patients. Modifiable risk factors can be minimized if patients and doctors are more aware.