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CC BY 4.0 · International Journal of Epilepsy
DOI: 10.1055/s-0045-1814736
In the Spotlight

Fort Lauderdale, Train Ride to the Tropic of Cancer, and Untreated Epilepsy: A Serendipitous Coming Together

Authors

  • Mamta Bhushan Singh 

    1   Department of Neurology, All India Institute of Medical Sciences, New Delhi, India
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(As delivered at the H.C. Bajoria Oration in ECON 2025 in Chennai on 24th August 2025)

I am grateful to the Indian Epilepsy Association for honoring me with the HC Bajoria Oration of 2025. Here is a brief summary of my epilepsy journey as presented during the oration.

Soon after joining as a faculty member at the All India Institute of Medical Sciences (AIIMS), New Delhi in 2002, the challenges faced by most epilepsy patients, especially related to access to care began to pique my interest. I made two observations—First, not all epilepsy patients who were turning up at AIIMS from distant states actually needed the kind of comprehensive, tertiary level care that we are set up to provide.[1] Patients came with great difficulty, often spending money they had borrowed, for relatively straight forward presentations that should have been diagnosed and treated in their home states. Second, outreach clinics done on weekends around Delhi revealed that there were large numbers of epilepsy patients even in the National Capital Region, who remained either entirely untreated or inadequately treated. While I was confronting the difficulties with epilepsy care, I was fortunate to land a much coveted opportunity generously offered by the Palatucci Advocacy Leadership Forum of the American Academy of Neurology. I was invited to Fort Lauderdale, Florida, United States, to train as a patient advocate in the Class of 2008. This 5-day high-intensity advocacy bootcamp not only gave me motivation, clarity of thought, tools, and skills but most importantly gifted me a lifetime of very supportive, encouraging, and inspiring advocacy cotravellers that I am eternally grateful for.

The Lifeline Express (LLE) is a hospital on a train run by the Impact India Foundation.[2] This mobile hospital goes around the country providing multiple health services in remote, resource-scarce communities. All services provided on the LLE are free of cost. I visited the LLE for the first time on June 19, 2009 when the train was parked at Vidisha, Madhya Pradesh. Vidisha is located approximately 25 km from the Tropic of Cancer along a scenic drive on NH 46. This was the beginning of my LLE Epilepsy Clinic journey. The LLE arrives at a new location every month and stays there for about 3 weeks during which multiple teams arrive, work, and depart as per a predecided schedule. An extensive public messaging conducted along with the local administration in the days leading up to the start of a project ensures that patients in nearby communities are made aware of what service would be available on the train-hospital on which day. On my request, epilepsy clinics were conducted over any one weekend at each location with the epilepsy team reaching the clinic site sometime on the night of Friday or very early morning on Saturday and leave on Sunday evening. On most occasions, the epilepsy team would consist of at least 1 to 2 neurologists and 2 to 3 epilepsy educators. In an average epilepsy clinic on the LLE, 150 to 200 patients would turn up to consult. After patients completed registration formalities, there would be a session of counseling in groups of 25 to 30 patients with their accompanying family members or carers. Following this, patients lined up to consult with the neurologists one by one where a clinical diagnosis was made and prescriptions handed over. Patients then went to the pharmacist where a 1-month free supply of the prescribed antiseizure medicines (ASMs) were dispensed. The last stop for each patient was the epilepsy educator's desk where patients were explained the prescription and individually counseled as per his or her needs or issues. I believe that having high-quality, motivated, and empathetic epilepsy educators as an essential part of every epilepsy outreach clinic is mandatory for providing good care in spite of the very large patient volumes that are served in these clinics.

Meticulously collected data from the LLE included not just demographic details and patient contact information but also epilepsy-related clinical and treatment information. All of this data provided an opportunity to answer several research questions. We found untreated epilepsy in abundance in many states and looked into what all led to this treatment gap and what interventions may improve the situation. The remaining part of this oration briefly summarizes research questions that this epilepsy outreach work inspired and facilitated.

The first question that anyone who witnesses the extreme epilepsy treatment gap wrestles with is—how can untreated patients be brought under the ambit of care expeditiously in spite of a severe shortage of doctors? Can a mobile application (App) be developed to do this? Dr. Victor Patterson from Belfast, my cotraveller, friend, and collaborator in this epilepsy journey is a telemedicine pioneer and had started thinking about such an App very early on.[3] We have subsequently validated Victor's Diagnostic App in Nepal, in a LLE clinic and in a tribal population in Chhattisgarh.[4] [5] After the diagnostic utility of this App was evident, Victor more recently set out validating an algorithm developed in India, which distinguishes focal epilepsy from generalized epilepsy.[6] Results revealed that this algorithm also worked in Sudan.[7] Finally, combining features of the diagnostic and epilepsy-type Apps and adding features required for making an appropriate ASM selection, an epilepsy management App has been developed and validation studies from an Indian population are under publication while results from a study conducted in Pakistan have been published.[8]

As patients on the LLE and most of our other outreach clinics are started on ASMs based only on a clinical history and examination without investigations, it was important to test if the distinction between focal and generalized epilepsy could be reliably made based only on clinical information without using data from electroencephalogram (EEG) and any kind of neuroimaging. For this, we had two investigators look at 512 consecutive epilepsy patients. One investigator relied only on patient history and examination while the second investigator additionally reviewed EEG and neuroimaging data. The result of this study revealed that both investigators agreed in their classification of epilepsy into focal and generalized in all but 3.2% patients.[6] More recently, we have tested another hypothesis related to investigating epilepsy patients that seemed important as a large proportion of focal epilepsy that presents to us is still related to calcified lesions. We would all agree that calcified lesions are best seen on noncontrast computed tomography (NCCT) or plain CT scans. Two hundred and nineteen consecutive, eligible patients with focal or unknown epilepsy underwent an NCCT followed by a contrast-enhanced CT (CECT). The CECT scan added no new information that was not already revealed by the NCCT and that warranted a change in patient management.[9] The recommendation from this study was that epilepsy patients with focal or unknown, drug-responsive epilepsy of 3 months or longer duration, would be ideal candidates to be investigated by an NCCT as the initial imaging choice, especially in those communities where intracranial infections leading to calcifications is high.

While we continued our weekend epilepsy outreach clinics once a month on the LLE, we were somewhat skeptical and worried about how long these patients would continue ASMs. We had started them on treatment and provided some epilepsy information and counseling but were unable to set up an opportunity for regular follow-up care as is customary in hospital-based epilepsy clinics. We therefore conducted a couple of studies looking at these outcomes. The first study reported outcomes at 6 months after patients had been started on treatment and reported that 103 (72.5%) of the respondents were continuing the prescribed ASM in spite of no follow-up.[10] In a second study, we looked at outcomes up to 5 years after treatment was started on the LLE and compared them with outcomes of patients who had consulted with us at AIIMS during the same time.[11] Of the LLE clinic patients, 351 (71.5%) were still continuing treatment as compared to 581 (87%) from the AIIMS clinic. Also, 106 (22%) patients from the LLE clinic had prematurely discontinued ASMs as compared to 39 (6%) from the AIIMS clinic. The limitation of this study was that of the eligible patients, 50% from the LLE clinic and 44% from the AIIMS clinic could not be contacted for outcome assessments due to several reasons. Results still seemed encouraging and while we continue to test models of providing follow-up care to epilepsy patients, we think that these studies provide credible evidence of the utility of even one-time outreach epilepsy clinics in communities that have large numbers of untreated epilepsy patients.

Exploring other possible follow-up models for the chronic care of epilepsy patients led us to the next three studies. In the first, a trained nurse independently followed up 175 patients and her performance was compared to that of a neurologist on parameters selected a priori.[12] The interrater agreement between the nurse and neurologist in following up patients was 76 to 94%. Most unanimity (k = 94%) was in identifying ASM adverse effects, while least agreement (k = 76%) was present regarding decisions to modify ASMs.

The mean patient satisfaction score with nurse follow-up was 37.63 ± 3.26 (maximum possible score 40). The second study was a randomized control trial that compared telephonic follow-up of epilepsy patients with in-person clinic follow-up. In the 465 patients who participated, the primary outcome of breakthrough seizures in the two arms was similar (p = 0.43). Additionally, the study showed that telephonic follow-up, in comparison to in-person clinic follow-up, also saves time and money and fewer patients are lost to follow-up.[13] The third study was also a randomized control trial to test if an additional virtual interactive epilepsy education session improves posttest epilepsy knowledge scores more than providing digital educational material alone in epilepsy patients and their caregivers.

In a sample of 130 patients and caregivers, the study revealed that digital educational material improved posttest epilepsy knowledge scores in both arms. Knowledge scores significantly improved further, in the arm that received an additional virtual interactive session.[14]

Why should we care if epilepsy patients remain untreated? Untreated epilepsy constitutes low-hanging fruit. At least 70% of all epilepsy is drug-responsive and all it would take is improving epilepsy in primary care to ensure that most patients do not have to live their lives without proper treatment. Not only is untreated epilepsy a cause of injuries,[15] mutilation, and disability but it is also extremely stigmatizing and snatches away the opportunity of living a wholesome life from epilepsy patients and their families.


Conflict of Interest

None declared.

Acknowledgments

The author thanks the Department of Neurology, AIIMS, New Delhi, Impact India Foundation & Lifeline Express, Late Col Randhir Singh (CEO LLE), Palatucci Advocacy Leadership Forum, AAN, and Dr. Victor Patterson, Dr. Madhuri Behari, Dr. Rohit Bhatia, Dr. Roop Gursahani, Dr. Vineeta Singh, and Dr. Asuri Narayan Prasad. The author also thanks epilepsy educators: Priya Jain, Sumeet Man Singh, Shelly Gandhi, Sagun Bajpai, Kavita Shanbhag, and Srilatha Srikant.


Address for correspondence

Mamta Bhushan Singh, DM, FIAN, FAAN
Department of Neurology, All India Institute of Medical Sciences
New Delhi 110029
India   

Publication History

Article published online:
04 February 2026

© 2026. The Author(s). This is an open access article published by Thieme under the terms of the Creative Commons Attribution License, permitting unrestricted use, distribution, and reproduction so long as the original work is properly cited. (https://creativecommons.org/licenses/by/4.0/)

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