50 new cases. >100 new cases. Epilepsy. Epilepsy: Epidemiology, Service Delivery & Access to Treatment in Resource-poor Settings.

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1 UCL INSTITUTE OF NEUROLOGY DCEE Epilepsy: Epidemiology, Service Delivery & Access to Treatment in Resource-poor Settings Professor Ley Sander, MD PhD FRCP NIHR UCL Hospitals Biomedical Research Centre UCL Institute of Neurology, Queen Square, London, Epilepsy Society, Chalfont St Peter, UK & Epilepsy Commonest serious neurological condition Affects >60 million people worldwide Globally distributed, no racial or geographic barriers Highly stigmatized High co-morbidity High risk of premature mortality Heavy burden to the individual and society Ngugi et al, Epilepsia 2010 Epilepsy: the Individual Burden Definition May results in: Consequences for: Social disadvantage Social exclusion Disability and co-morbidity Injuries Premature Mortality Education Employment Dependency Social relationships Personal development Family life Health Epileptic seizures are synchronous & excessive discharges in the brain cortex that lead to an event which is clinically discernible to the person and or to an observer Epilepsy is an increased likelihood of having unprovoked epileptic seizures But... One swallow doesn t make a summer Seizures need to be recurrent Sander, Epilepsia 2004 Epilepsy? Just a tendency to have unprovoked seizures Result of an underlying problem of the brain, or a system problem A symptom-complex not a disease! Not like diabetes but more analogous to anaemia Many causes and risk factors New Cases of Epilepsy/year: a Class Divide Developed world 50 new cases per 100,000 population Resource-poor countries >100 new cases per 100,000 population Sander, Curr Opin Neurol, 2003; Ngugi et al, Neurology

2 Social Economic Determinants of Epilepsy Risk in Developed Countries Socially & economically disadvantaged people more likely to develop epilepsy What Contributes to the Risk of Epilepsy? GEOGRAPHIC LOCATION BRAIN MATURATION GENETIC MAKEUP INFECTIONS TRAUMA AND TUMORS CONGENITAL AND Incidence in most deprived fifth 2.3 times that in the least deprived fifth Heaney et al., BMJ 2002 DEVELOPMENTAL Epilepsy: Risk Factors Varies with age and geographic location Congenital, developmental and genetic conditions in childhood, adolescence and young adults Head trauma, brain infection and tumours at any age although tumours more likely over age 40 Cerebrovascular disease common in elderly Endemic infections in certain areas malaria, neurocysticercosis, paragonomiasis Family history: a risk enhancer Sander, Curr Opin Neurol, 2003 First Epilepsy Mantra Is it Really Epilepsy, is it? Diagnostic accuracy epilepsy can only be diagnosed by taking a history of the index event or by chance observation of a seizure diagnosis is a discretionary judgement dependent on skill and experience, and quality of witness information available 10-20% of chronic cases referred to tertiary centres do not have epilepsy > 50% of cases suspected or diagnosed in primary care do not have epilepsy Duncan et al, Lancet 2006 Second Epilepsy Mantra Epilepsy and what else? High Prevalence of Co-morbidity Psychiatric Higher risk of depression, anxiety, personality disorders, psychosis Somatic Higher risk of vascular disorders (CVA, MI, PVD, LVH hypercholesterolaemia), migraine, GI (IBS, Crohn s, bleeding), hypertension, systemic auto immune diseases, dementia, cancer, obstructive sleep apnoea, injuries and fractures High Prevalence of Co-morbidity Co-existence of conditions preceding, co-occurring with, or following diagnosis, related or unrelated to underlying cause Somatic and psychiatric Important part of the burden Affects quality of life utilization of health service financial cost Role in premature mortality Complicates management Independent of seizure activity Gaitatzis, Sisodiya & Sander. Epilepsia 2012; Devinsky et al., Epilepsy Curr 2013 Gaitatzis, Sisodiya & Sander Epilepsia 2012, Kadima et al., CDC MMWR

3 Epilepsy: Not a Benign Condition Consistent and overwhelming evidence of premature mortality in people with epilepsy In mature economies 2-3 fold increase over general population Premature Mortality Risk: Long Follow up of a Cohort in Rural East China Greatest in the young and those with chronic epilepsy years: SMR 5-8 Chronic epilepsy: SMR 8 15 Greater in Resource-poor settings Young in Rural China: SMR > 20 Young in Kenya: SMR > 10 Sander, Cur Opin Neurol 2003; Ding et al, Epilepsia 2013; Ngugi et al, Neurology 2014 Ding et al, Epilepsia 2013 Age-specific SMR of Treated Convulsive Epilepsy in Rural Kenya Long Term Mortality in the UK 792 people who developed epilepsy over 25 years ago and followed from onset Premature mortality persistently despite most becoming seizure-free 82% of people seizure-free at 25 years Mortality 2.6 fold at years from diagnosis SMR significantly even in those always seizure free Most deaths due to non-epilepsy related causes Role of co-morbidity Ngugi et al Neurology 2014 Neligan et al., Brain 2011 The Stigma of Epilepsy Social process or related personal experience characterised by exclusion, rejection, blame, or devaluation resulting from experience or anticipation of adverse social judgment about a person or group identified with a health problem Often causes as much suffering as, or more than, the physical manifestations, and affects how people respond to the disease burden Weiss & Ramakrishna, Lancet 2006; The Stigma of Epilepsy Social exclusion as a result of stigma Children banned from school Relationship problems in young people Adults barred from marriage Employment denied, even when seizures would not render work unsuitable or unsafe Civil and human rights violations de Boer, Mula, Sander. Ep Beh

4 Economic Burden: Disability Adjusted Life Years Epilepsy contributed > 17 million DALYs in 2010 (about 1% of all DALYs) MS 1 million PD 2 million Alzheimer 11 million All neurological 74 million Most of the burden of epilepsy amongst socially and economically disadvantaged people The dragging down effect of epielpsy! Diseases Burden Project, Lancet 2012 Delivery of Health for Epilepsy Health economics not well understood variations between countries absence of widespread health insurance lack of data Priorities epilepsy usually not a priority Infra-structure shortage of trained medical and para-medical personnel lack of facilities treatment gap Health Seeking Treatment Models Sociological aspect often neglected Cultural expectations in most indigenous systems, treatment is a finite, short-term process Stigma attached to the condition may take different forms Patient s beliefs Logistics expense, distance from facilities Ad Hoc Tanzania, Malawi, Ethiopia, Kenya ICBERG Kenya, Pakistan, Ecuador SANCHAR-AROD 24 Parganas WHO Global Campaign Demonstration Projects I.e. China, Senegal, Brazil, Georgia Treatment Models Abridged Recommendations for Epilepsy & Seizures Lessons: Long term commitment required for sustainability Existing infrastructure Role of NGO No black box approach - adapt to target! Need to involve community Audit results Phenobarbital safe and efficient Assure supplies Dua T, et al. Evidence-Based Guidelines for Mental, Neurological, and Substance Use Disorders in Low- and Middle- Income Countries: Summary of WHO Recommendationse PLoS Med 8(11): e

5 Conclusions Epilepsy is a major public health problem worldwide Majority of sufferers are in resource-poor countries Highly stigmatised High burden to individual and society Possible to deliver health care within existing stractures 5