Epilepsy way ahead - A strategic meet pptx
- 1. EPILEPSY PROGRAM WAY AHEAD Strategic meet Neurosciences Department Dr BALAJI B S Consultant Neurologist & Epileptologist
- 2. Outline Background Epilepsy program Presurgical evaluation Previous Institutional Experience
- 3. BACKGROUND Epilepsy is a chronic noncommunicable disease of the brain that affects people of all ages. While epilepsy is not rare, affecting 1 in 100 people worldwide, it is a disease that is still largely misunderstood among the general public, healthcare professionals, and individuals with the condition themselves. WHO reports epilepsy affects 65 million people worldwide, of which 30 million are in Asia. (13 million INDIA)
- 4. It is estimated that up to 70% of people living with epilepsy could live seizure-free if properly diagnosed & treated. 他 th of people with epilepsy living in low-income countries do not get the treatment they need. Treatment gap India- > 80 % in rural areas
- 5. People living with epilepsy are frequently subject to social stigma and exclusion, and this contributes greatly to the burden associated with epilepsy. Living with epilepsy can give rise to many challenges, in addition to the medical burden. These include social and psychological stress on the individual and family members, missed educational opportunities, and underemployment or unemployment.
- 6. However, efforts for greater community education on epilepsy can have a significant positive impact. Reducing social stigmas and increasing opportunities for individuals is key to improving quality of life for epileptics
- 7. THE UNMET NEED FOR EFFECTIVE TREATMENTS, PRECISION THERAPIES AND HIGH-QUALITY CARE Arriving at the correct epilepsy diagnosis: complex sometimes Accurate diagnosis is critical. Todays treatments are effective at controlling seizures in ~60% of people with epilepsy, but adverse effects of therapy are common and impair quality of life. 30- 40% of PWE have seizures that continue to be treatment resistant (Drug Resistant Epilepsy), despite continuous advancements in the management of epilepsy and more than 15 anti-epileptic drugs being approved.
- 8. India with over 1 million people with DRE exhibits around 10-50 % of the patients as potential surgical candidates. Surgical management is a safe and most effective therapeutic approach for refractory epilepsy, with cost-effectiveness in terms of the long-term direct, indirect, and intangible costs. only one in 1,000 eligible patients undergoes epilepsy surgery in India, eventually resulting in a growing pool of patients with refractory epilepsy, accounting for the 80% of the health care costs for epilepsy.
- 9. This enormous surgical treatment gap is attributable to various social, economic, demographic, political, and cultural barriers in establishing and maintaining successful epilepsy surgery programs in India. Cost-effective, sustainable epilepsy care programs are urgently required in India
- 10. Strategic Plan - Four Objectives (Four Pillars) Raise awareness & educate communiti es Diversify Revenue Best-in-class organization Epilepsy camps
- 11. communication channels provide essential, dynamic and personalized information about seizures and the epilepsies. FM radio broadcasts, newspaper articles & health education sessions. Pamphlets and posters : distribution and posted in community clinics, larger hospitals and outreach services. Topics epilepsy and its management causes of epilepsy debunking myths about epilepsy living with epilepsy compliance with medication the availability and use of antiepileptic medicines what to do during a seizure home management of epilepsy prevention of accidents Raise awareness & educate communiti es
- 12. We will drive change through strategic national and local partnerships, to include affiliated and non-affiliated non-profits, corporate sponsors, healthcare organizations and governmental and philanthropic funders. Linking the rotary, private institutions, and the corporate social responsibility The liaison yields free investigations, beds, and surgeries for the patients enrolled in the program. Diversify Revenue
- 13. Digital app: The user-friendly application for the registration of the patients with epilepsy, collection of data, and a personalized profile recordable and analyzable for the diagnostic, therapeutic, research, and statistical purposes. choice of language between English and Kannada and a manual help center contactable by the patients. Epilepsy Camps: Epilepsy screening camps were organized in and around the state of Karnataka in liaison with the public health centers. Free medical treatment was provided to the medically treatable patients of epilepsy. Identify and refer : patients with refractory epilepsy Digital App Epilepsy Camps
- 14. Epilepsy Comprehensive Program Team of experts : Epileptologist, Neurosurgeon, Neuroradiologist, Neuropsychologist, Neurotechnologist Cutting-edge technology and innovative approaches to provide best-in-class treatments: EEG, VEEG, MRI, PET etc Patient-centered approach : tailored support and personalized treatment plans. Comprehensive Patient Care Conference for Surgical Candidates BEST-IN-CLASS ORGANIZATION
- 16. When to consider epilepsy surgery ? Persistent Seizures despite adequate pharmacological treatment Drug resistant epilepsy (DRE) may be defined as failure of adequate trials of two tolerated and appropriately chosen and used AED schedules (monotherapies or in combination) to achieve sustained seizure freedom. Significant impairment of quality of life
- 17. Presurgical tests No single test adequately defines the epileptogenic region Mandatory noninvasive universal access Clinical semiology and Exam Scalp EEG Imaging MRI
- 18. Optional Noninvasive Limited Access Video EEG Magnetoencephalography (MEG), EEG-fMRI, Nuclear imaging (PET,SPECT ) Neuropsychological testing Wada (intracarotid amobarbital) test Invasive EEG monitoring
- 20. American Epilepsy Society 2008 Comprehensive Patient Care Conference for Surgical Candidates Epileptologist presents the patient Video-EEG studies are reviewed Semiology Interictal EEG morphology Ictal EEG morphology Neuroradiologist discusses imaging studies Neuropsychology results are examined Neurosurgeon delineates surgical options Discussion of risks/benefits/outcomes Group consensus S-際際滷 20
- 21. Types of Surgical Procedures Resective Surgery: single seizure focus in non-eloquent region. Palliative Surgery: For drop attacks: corpus callosotomy For Rasmussens encephalitis or hemimegalencephaly: hemispherectomy
- 22. Surgical Treatment of Epilepsy Modified from McKhann G.M. and Howard M.A.: Epilepsy Surgery: Disease Treatment and Investigative Opportunity, in Diseases of the Nervous System: Clinical Neurobiology, 2002. Curative Palliative Pathologies MTS TLE Non-MTS TLE Lesional Frontal Lobe epilepsy - Low Grade Glioma SMA/cingulate epilepsy - Cav. Malformation Malformations of cortical development Procedures Lesionectomy Hemispherectomy Disconnection Lobectomy Topectomy (Callosotomy) MSTs Figure 2
- 23. EPIC Program : Our Past Experience The EPIC programme is Indias first distinctive initiative to focus on Refractory epilepsy (uncontrolled epilepsy), specially dedicated for epilepsy patients who fall under the category of Below Poverty Level (BPL). Out of the 610 patients, for the first time in Karnataka, 23 patients with refractory epilepsy underwent complex epilepsy surgeries including robotics surgeries, free of cost in a private hospital setup. In addition, 2 patients underwent robotic-assisted hemispherotomy for the first time in the State of Karnataka.
- 25. Conclusion Epilepsy is a condition that along with the medical or surgical treatment, demands an empathetic approach. Initiatives like EPIC involving a multicenter approach satisfy this need of empathy by sufficing free epilepsy screening and surgeries. It needs a liaison between the various levels of institutions to develop a thorough connection between the patient and physician on physical, mental, and social levels.
- 26. It is recommended to sensitize the government towards the problem of epilepsy and aid in the replication of cost-effective surgery models in India. In the long run, Epilepsy program shall be a beneficial tool towards the problem of refractory epilepsy, irrespective of the institute dealing with it.
- 27. Thank you
Editor's Notes
- #3: It accounts for 0.6% of the global burden of disease. Nearly 80% of people with epilepsy live in low- and middle-income countries, about 75% of whom do not receive the treatment they need.
- #4: Sz free if appr Rx for 2to5 yrs, unfortunately
- #5: Myths & taboos surrounding epilepsy, opting for voodoos, lack of hospital availab to prevent birth trauma, severe shortage of med prof in rural, Compared to the general public, higher rates of premature mortality, injury, cognitive impairment, depression, social isolation, and unemployment.
- #7: extensive history, electroencephalogram (EEG) monitoring, neuroimaging, and other diagnostic testing. vast majority of current treatments are prescribed based on the type(s) of seizures rather than the cause of the epilepsy; For some, epilepsy is a manageable chronic illness -- affected individuals have risen to the highest echelons of professional success. However, for others, epilepsy is a devastating and progressive disease leading to developmental delay, regression and early death. Wide variations in epilepsy care delivery and clinical practice may also contribute to poor individual outcomes.
- #8: epileptogenic tissue is removed , adequate safety ( death rate<2%), an estimated 5 million active cases of epilepsy :25% resistant , half potential Sx candi, 5lakh at given time,
- #11: The audiences : church, gated socities, IT health work, government offices, members, students, schoolteacher, health care workers at local hospitals and outpatient clinics, the gene, pregnant women and nursing mothers.
- #14: Holistic care, multidisciplinary approach