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Table of Contents
REVIEW ARTICLE
Year : 2015  |  Volume : 18  |  Issue : 4  |  Page : 369-381
 

Epilepsy in India II: Impact, burden, and need for a multisectoral public health response


1 Department of Epidemiology, Centre for Public Health, Bangalore, Karnataka, India
2 Director/Vice-chancellor and Professor of Neurology, National Institute of Mental Health and Neurosciences, Bangalore, Karnataka, India

Date of Submission19-Dec-2014
Date of Decision26-Jan-2015
Date of Acceptance04-Apr-2015
Date of Web Publication17-Nov-2015

Correspondence Address:
Gopalkrishna Gururaj
Department of Epidemiology, Centre for Public Health, National Institute of Mental Health and Neurosciences, Hosur Road, Bangalore - 560 029, Karnataka
India
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/0972-2327.165483

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   Abstract 

Epilepsy is a common neurological disorder whose consequences are influenced socially and culturally, especially in India. This review (second of the two part series) was carried out to understand the social impact and economic burden to develop comprehensive program for control and prevention of epilepsy. Epilepsy is known to have adverse effect on education, employment, marriage, and other essential social opportunities. Economic burden associated with epilepsy is very high with treatment and travel costs emerging as an important contributing factor. A vicious cycle between economic burden and poor disease outcome is clear. There is no significant change in the perception, stigma, and discrimination of epilepsy across the country despite improvement in educational and social parameters over the time. The huge treatment gap and poor quality of life is further worsened by the associated comorbidities and conditions. Thus, a multidisciplinary response is needed to address the burden and impact of epilepsy which calls for an integrated and multipronged approach for epilepsy care, prevention, and rehabilitation. Service delivery, capacity building, integration into the existing program, mobilizing public support, and increasing public awareness will be the hallmarks of such an integrated approach in a public health model.


Keywords: Care, economic burden, epilepsy, India, national programs, prevention, psychosocial impact, rehabilitation, stigma, treatment gap


How to cite this article:
Amudhan S, Gururaj G, Satishchandra P. Epilepsy in India II: Impact, burden, and need for a multisectoral public health response. Ann Indian Acad Neurol 2015;18:369-81

How to cite this URL:
Amudhan S, Gururaj G, Satishchandra P. Epilepsy in India II: Impact, burden, and need for a multisectoral public health response. Ann Indian Acad Neurol [serial online] 2015 [cited 2019 Oct 18];18:369-81. Available from: http://www.annalsofian.org/text.asp?2015/18/4/369/165483



   Introduction Top


The disability and psychosocial impact caused by epilepsy in socio-culturally determined traditional societies like India is phenomenal and impose huge economic burden to the individual and the society. Understanding the social and economic impact becomes critically important for effective control and prevention of epilepsy in resource-poor settings like India.

With this in background, an extensive literature review was undertaken to develop a comprehensive picture of epilepsy in India from a multidimensional perspective. Part 1 of the series discussed the epidemiological profile and burden of epilepsy along with its association with major sociodemographic correlates and causative factors. The objectives of the present report is to examine the treatment gap and its implications, psychosocial and economic impact, and to broadly identify ongoing efforts for epilepsy control and care, setting out a road map for future activities in India.


   Search Strategy and Selection Criterial Top


We searched PubMed (from 1950 to July 2014) for English language papers reporting psychosocial or economic consequences and service organization for epilepsy using the search terms "stigma", "quality of life", "education", "employment", "marriage", "disabilities", "psychosocial impact", "treatment gap", "cost of AEDs", "health care costs", "economic burden", "knowledge", "attitudes", "practice", "comorbidities", "organization of services", and "delivery of services". The above search terms were combined with the words "epilepsy" and "India", "South Asia", "developing countries", "tropical countries", "West Asia" using Boolean operator "AND" for retrieving articles related to epilepsy and India. Studies published in peer-reviewed journals, that used valid study instruments and methodology and that conducted in India were preferred for inclusion. Case reports were excluded. The initial search retrieved 1,376 records. After exclusion, 243 full text records and references from eight reviews were reviewed for relevance [Figure 1]. Previous review papers on epilepsy were examined carefully for relevant references, and papers known by the authors to be relevant to the topics were also included.
Figure 1: Flowchart of study selection

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   Cultural Interpretations of Epilepsy Top


Epilepsy is associated with substantial stigma and discrimination in the Indian subcontinent as in many other low-and middle-income countries (LMICs) where culture has a strong influence on life of people. "Stigma" means being devalued by individuals or communities on the basis of real or perceived health status, while "discrimination" refers to the legal, institutional, and procedural ways that people are denied access to their rights because of their real or perceived health status. [1],[2]

The word epilepsy originated from the Greek word which means "to take court, to grab, or to seize". [3] There are many interpretations of the word epilepsy in different communities and even today it is referred as 'punishment for participation in a forbidden sacrifice' in some societies. Some common behavior observed among persons with epilepsy (PWE) has led people to believe that it is due to possession by evil spirits or sins of past life. Consequently, there are many cultural definitions and interpretations for the word epilepsy and societies follow different practices to manage the condition on their own understanding. Some of the harmful practices have resulted in stigma, poor health, and worst outcomes for PWE.


   Treatment Gap in Epilepsy Top


Treatment gap is defined as the number of people with active epilepsy not on treatment or on inadequate treatment, expressed as a percentage of the total number of persons with active epilepsy. [4] Epilepsy treatment gap is a useful indicator for accessibility and quality of epilepsy care and undoubtedly, a very high treatment gap would result in increased disease burden.

Even though more than 70% of patients on regular and systematic treatment achieve long-term remission usually within 2-5 years of diagnosis, huge disparities in treatment gap are observed both between and within countries and differently for urban-rural settings. [5] A recent systematic review reported a treatment gap of over 75% in low-income countries, 50% in the lower middle- and upper middle-income countries, and less than 10% in high-income countries (HICs). [6] The various causes of treatment gap expressed as median and range were cost of treatment (62%; 11-90%), non-availability of drugs (53%; 18-44%), belief in traditional treatment methods (44%; 6-82%), and superstitions and cultural beliefs (40%; 7-65%). [7] Shortage of skilled manpower, low literacy rates, and long distance from a healthcare facility and other infrastructure problems were other factors responsible for treatment gap. In an another systematic review among resource-poor countries, a treatment gap of 64% was reported for Asia with huge urban-rural variations. [7],[8]

Treatment gap in India were found to be comparable with other less industrialized countries (Brazil, China, Pakistan, and Togo). [7] Studies from India have reported treatment gap between 22 and 95% [Table 1], [9],[10],[11],[12],[13],[14],[15],[16],[17],[18],[19],[20],[21],[22] with much higher gap in rural population and among women. [23] A very high treatment gap of 95% was reported in tribal population of Jharkhand, while a treatment gap of 22% was reported in the highly literate affluent Parsi population in Mumbai [Table 1]. [9],[21]
Table 1: Treatment gap in epilepsy as observed in Indian studies

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It is equally important to address the secondary treatment gap among those patients who discontinued the initiated treatment. Cost of antiepileptic drugs (AEDs), unemployment, frustration, and marital harmony were found to be the important causes for secondary treatment gap besides stigma. Das et al., from Bengal reported a secondary treatment gap as high as 42.8%. [24] A recent review of medical records from tertiary care hospitals in Karnataka has revealed polytherapy as major cause for non-compliance with AEDs. [25]


   Education Top


Epilepsy in early life has adverse impact on growth and development of the children. Children with epilepsy, especially in the rural settings often do not get into schools, have difficulties in coping abilities, exhibit drowsiness and behavioral problems, experience decreased attention, and have poor academic performance. [26],[27] Consequently, they experience discrimination in school environments, and few discontinue education. A multicentric, hospital-based study in India has observed adverse outcome of education because of epilepsy in 26.1% of urban patients and 38.3% of rural patients. [28] Pal et al., from Bengal have reported significant social deficits among children with epilepsy in the form of limited peer group activities. [29] Lack of adequate knowledge among teachers and peer groups combined with parental attitudes worsens the condition further resulting in poor academic achievements and school dropouts.


   Employment Top


Employment is a marker of successful education and social opportunity. PWE are less likely to obtain a sustainable job or retain the existing job. Difficulties in workplace environments experienced by PWE ranged from non-availability of jobs, discrimination, poor performance, increased stress, frequent absenteeism, and finally loss of job. There is a strong reluctance to employ a PWE among employers. The situation worsens when a PWE had epileptic attacks in the workplace that results in social stigma and pushing one to low income assignments, sometimes even leading to job termination.

A survey conducted in Kerala revealed that 58% of people with epilepsy were unemployed, compared with 19% of the general population due to seizure-related falls in workplace, inadequate education, and AED-induced fatigue. [30] An adverse work efficiency and prospectus was noticed among nearly one-fourth of PWE for more than 3 years. [28] Das et al., found that 20.6% of patients on AEDs were unemployed and 5.7% had lost the job with higher proportion among those who discontinued medication. [24]

Driving and epilepsy has been critically reviewed by the legal sector and recently it has been argued that PWE should not be actively barred from undertaking any responsibilities. [31] A recent review endorses that a seizure during driving is dangerous, but the risk is somewhat predictable and is not substantially higher than for those with other chronic medical conditions, such as heart disease, diabetes, or even for those who consume alcohol. [32],[33],[34] This supports permitting patients with controlled seizures to drive at least personal vehicles and not public commercial vehicle once adequate seizure control is achieved.


   Marriage Top


The stigma attached to epilepsy becomes more pronounced, especially when it comes for marriage; even though the word epilepsy has been removed from the Hindu Marriage Act 1955 and Special Marriage Act long ago. [35] For females, the issues of child-bearing and child-rearing and for the male the issues of employment and income have become critical during the marriage. A study by Agarwal et al., reported a lower marriage rate, delayed marriage especially among females, suspended marriage, and higher divorce rate in PWE as compared to general population. [36] The disease status of PWE is usually not disclosed in most of India at the time of marriage due to fear of failure of marriage negotiations. Santosh et al., observed that nearly 55% of people with epilepsy have concealed their disease status at the time of marriage. [37] There was an increased demand for dowry or cancellation of engagements following disclosure. [38]

Marital disharmony ensues when the presence of epilepsy becomes evident. Among those who concealed their epilepsy status at the time of marriage; 18% were divorced, 20% were separated, and 45% were disturbed. [37] Das et al., have reported adverse treatment outcome due to marital disharmony among the PWE. [24] Pregnancy after marriage was discouraged due to fear of having a child with epilepsy or other abnormalities. Due to the long fought battle of Indian Epilepsy Association (IEA), the Indian judiciary has in recent times pronounced that epilepsy should not be equated to mental illness and the practice of divorce among married individuals due to epilepsy should be strongly discouraged.


   Economic Impact Top


Epilepsy imposes a substantial economic burden to PWE and their families. People from lower socioeconomic status are more vulnerable due to their limited capacity to access good quality healthcare. Besides poor employment potentials, PWE have to spend on additional costs of transport and loss of wages to obtain medications due to interrupted supply of free AEDs in public-funded institutions.

The economic impact of epilepsy has not been studied extensively in the Indian context. The cost involved in epilepsy care can be broadly grouped into direct, indirect, and intangible costs. [39],[40] Direct cost includes medical costs related to prevention, diagnosis, treatment and rehabilitation, and non-medical cost related to travelling, housekeeping, etc. It encompasses outpatient treatment, investigation charges, radiological investigations, cost of AEDs, and others. The indirect costs include loss of time, productivity, and wages incurred by the individual and their family. The psychosocial pain, stigma, and suffering constitute the intangible costs that are still difficult to measure. Given the inherent difficulty in computing the indirect costs like time spent by the caregiver, lost productivity (due to disability and premature mortality), and lost opportunities (due to premature abandoning of school and employment); they are not included in majority of the studies. Similarly, cost due to pretreatment help seeking, cost of treating comorbid conditions, cost of side effects of AEDs and their management as a part of direct cost, and the intangible costs are also not included in most of the studies. Thus, the actual economic burden due to epilepsy is expected to be much higher than the available evidence.

Thomas et al., in 2001 estimated annual economic burden of epilepsy in India as 88.2% of Gross National Product (GNP) per capita and 0.5% of the GNP which is to the tune of INR 68.75 billion (US$1.72 billion). [40] The direct and indirect costs constituted 27.1 and 72.9%, respectively. [40] Similar to western studies, indirect costs exceeded the direct cost in most of the Indian studies [Table 2]. [40],[44],[45],[46] A recent review estimated the indirect costs to range from 12 to 85% of the total costs. [48] Pal et al., have reported lack of continuity in treatment due to high indirect cost burden. [49] Similar to the studies by Jacoby et al., and Begley et al., Krishnan et al., have reported investigations, cost of drugs, and inpatient care as a major component of direct cost. [44],[50],[51] In the same study direct treatment costs, travelling, and productivity loss accounted for 30, 6, and 64% of the costs respectively. [44] Recently, Sinha and Bhaumik have estimated average direct treatment cost per month due to drugs, travel, and investigations as 219 INR (US$3.64). [52]
Table 2: Economic impact of epilepsy in India

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Thus, the costs of AEDs emerge as an important contributing factor to the economic burden of epilepsy, especially in LMICs like India. Thomas et al., reported 57% share of the direct cost due to drugs alone. [40] The cost due to AEDs was dependent on the type of therapy (mono- or polytherapy), type of drug, type of healthcare (public or private), and their duration. Radhakrishnan et al., reported higher initial cost due to the use of polytherapy. [47] Usage of polytherapy and, different treatment regimen among pediatric and elderly population and the differential titration of drug dosage should be considered while assessing the drug costs. Among the AEDs, Krishnan et al., in 2004 have reported maximum annual drug cost for sodium valproate and minimum for phenobarbitone, while Haroon et al., observed higher drug cost for newer AEDs such as lamotrigine, levetiracetam, and lacosamide as compared to standard drugs. [41],[44] Among the newer drugs, clobazam had the lowest cost. The cost for treating epilepsy was further increased when epilepsy was caused by neurocysticercosis (NCC). This was due to extra cost for additional drugs which constituted 3.6% of the total direct cost and 20.7% of AEDs cost. [42]

The cost of treatment has deleterious effect on the drug adherence. Das et al., reported a default rate of 42.8% with cost of the drug(s) as main factor for discontinuation. [24] The discontinued group expended 40% of the total income, while the continued group expended only 18% of the total income for treatment highlighting the vulnerability of socioeconomically disadvantaged. The economic burden among the discontinued group was further worsened by the poor disease outcome through positive vicious cycle. Interestingly, when the cost of the drugs was drastically reduced by the government subsidy, high travel expenditure emerged as a major contributor of direct cost. [45] This highlights the critical role of accessibility and affordability of healthcare, further determined by the urban-rural disparity even among the population that uses public health sector in the absence of universal health assurance program.

It is estimated that India will have over 1 million people with medically refractory epilepsies with nearly half of them requiring surgery. But currently less than 500 epilepsy surgeries per year are undertaken in India, resulting in high surgical treatment gap and huge healthcare burden, as 80% of healthcare costs in epilepsy are accounted for by the patients with drug-resistant epilepsy. [53]

Apart from the effects of epilepsy per se, there exists a complex relation between epilepsy, comorbidities, and treatment. The burden of epilepsy is further complicated by its psychiatric and cognitive comorbidities. The early detection and management of these comorbidities is essential for effective prevention and control of epilepsy. Thus, the overall economic impact of epilepsy and the costs of medical care (where 80% of the healthcare provided by the private sector in India) are expected to be exceptionally high in India due to high treatment gap and associated comorbidities besides poor adherence to medication and lack of adequate services in the absence of universal health coverage.


   Epilepsy and Comorbidities Top


Research across the globe has highlighted the association of epilepsy in children with behavioral and psychiatric problems. In India, majority of studies on comorbidity comes from clinical settings except for few population-based studies on children. Srivastava et al., reported major depression and mixed anxiety depression as the most common neuropsychiatric manifestations in patients of NCC. [54] The various comorbidities identified in the patients who attended a tertiary care hospital were migraine, anxiety, depression, sleep disturbances, neurocysticercosis, pulmonary tuberculosis, and extrapulmonary tuberculosis. Hypertension, diabetes, osteoarthritis, asthma, hypothyroidism, and acid-peptic disease were the other less common comorbidities that were reported. [55]

Among the population-based studies, Datta et al., reported behavioral problems in children with epilepsy, while Hackett et al., documented the association of epilepsy with cognitive impairment. [56],[57] In a study from Bharwani district, epilepsy was found in 23.7% of the children with intellectual disability. [58] Also, epilepsy in children with intellectual disability was associated with lower intelligent quotient score. [58] Among the recent hospital-based studies, a higher frequency of psychiatric comorbidity was observed in children with longer duration of seizures, increased frequency of seizures, poor compliance with medications and especially, anticonvulsant polytherapy. [59],[60] Hence, it is important to differentiate comorbidities due to disease and drugs for proper management and should be one of the research priorities in the field of epilepsy in India.

For women with epilepsy (WWE), the data from Kerala Registry of Epilepsy and Pregnancy (KREP) reported higher frequency of anemia, ovarian cyst, fibroid uterus, spontaneous abortions, and congenital malformations. [61],[62] WWE are vulnerable for poor child rearing practice, which persisted even after intervention and studies have reported higher risk of children of WWE for developmental delay, low IQ, and low linguistic achievements. [63],[64],[65],[66]

Among the elderly, stroke is reported as the most common comorbidity with epilepsy. [67] This might be due to rising burden of non-communicable diseases such as hypertension and diabetes and epilepsy among the increasing elderly population in recent years. Brain tumor, head injury, and Alzheimer's disease are the other major CNS disorders associated with epilepsy in the elderly. These comorbid conditions have the potential to alter the pharmacodynamics and pharmacokinetics of AEDs, thereby complicating the management of epilepsy in elderly.


   Knowledge and Attitudes Top


The knowledge, attitudes, beliefs, and practices of individuals with epilepsy, their family, and the society have a major influence on recovery and quality of life of PWE. A poor knowledge and attitude towards epilepsy was observed among general public, school children, and teachers even though majority of them had heard or read about epilepsy [Table 3]. [12],[15],[63],[68],[69],[70],[71],[72],[73],[74],[75],[76],[77] Even among the primary healthcare doctors, overutilization of EEG, improper prescription of AEDs, and inadequate skills in the management of AED-resistant epilepsies have been reported. [78] A significant number of general public in Kerala believed in other traditional medical practices for treating epilepsy. [15] Among the PWE who attended a tertiary hospital, 7.7% reported the additional use of complementary and alternative medicine (CAM). [79] Das et al., found that significant number of patients in India had discontinued epilepsy treatment within 1 year because of poor knowledge regarding the outcomes after discontinuation. [24] In the large population-based studies, Radhakrishnan et al., in Kerala found that a considerable number of people still believed epilepsy as a form of insanity, while Sureka and Sureka in Rajasthan found that nearly one-fourth of the subjects thought epilepsy as disease of evil spirits. [12],[15]
Table 3: Summary of knowledge and attitudes about epilepsy in India

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Even though there has been a shift in the perceived knowledge and attitudes about epilepsy in HICs, the situation is far from satisfactory in many of the LMICs including India [Table 3]. There is a need for capacity strengthening of healthcare providers and creating awareness among students, teachers, and other educational institutions besides general community. A recent study evaluating the impact of comprehensive epilepsy education program for school teachers in Chandigarh has highlighted the need for regular workshops to improve and reinforce the knowledge and skills of the teachers about epilepsy. [80]


   Stigma and Quality of Life (QOL) Top


Numerous studies confirm the vulnerability of PWE to the pervasive stigmas in India [Table 4] and [Table 5]. [15],[30],[37],[43],[55],[72],[73],[74],[81],[82],[83],[84],[85],[86],[87],[88],[89],[90] The nature, extent, and impact of stigma associated with epilepsy are very high and act as a significant barrier for delivery of effective epilepsy care and utilization of available services. The discriminating attitudes of the society not only affect education, employment, marriage, and social activities but also prevent PWE to come forward to receive and continue care. It interferes with the timely access to healthcare, adherence to treatment, and lifestyle recommendations influencing the overall health of the individual. Finally, stigma results in poor quality of life for the affected individuals and their families. This is because of the varying family response to epilepsy that range from overprotection, guilt, anxiety, sadness, worry, confusion, and depression to even avoidance resulting in major psychosocial consequences like loss of self-esteem, social withdrawal, isolation, and even occasional instances of suicide. The overall quality of life is also affected at times due to medication.
Table 4: Quality of life among persons with epilepsy

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Table 5: Stigma and epilepsy

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Researches on epilepsy-related stigma in India are relatively scarce when compared to developed countries. Earlier studies have attempted to study the stigma from the set of beliefs and perceptions using locally developed knowledge, attitude, and practices (KAP) questionnaires. [91] Recently, there have been attempts to quantify stigma using standardized scales [Table 5]. [89],[90] Culturally sensitive tools are required to understand the distribution, determinants, and impact of epilepsy-related stigma. Earlier, Radhakrishnan et al., in Kerala found that negative attitude towards epilepsy was related to the age, gender, and education of PWE. [15] Joseph et al., in Mangalore found that stigmatization was related to the age and education, while Nehra et al., in Delhi found that younger age was associated with more psychosocial consequences of epilepsy. [89],[92] However, strategies to mitigate epilepsy-related stigma and the cost of epilepsy-related stigma, which are critical from implementation point of view are yet to be investigated comprehensively in India.


   Epilepsy and Disability Top


As discussed earlier, there are various studies in Indian settings that have shown the impact of epilepsy on various aspects of life among PWE. However, disability (defined as a physical or mental condition that limits a person's movements, senses, or activities) due to epilepsy in India is often overlooked and underevaluated. [93] Nehra et al., in a recent study from a tertiary care center in New Delhi observed that 69.7% of the patients had disability with 23.08% of them having severe disability with dysfunction in various physical and psychosocial domains. The disability was found to be increase with increasing stigma scores. [89]

From [Table 3],[Table 4] and [Table 5], it is evident that there is no significant improvement in the perception, stigma, and discrimination of epilepsy across the country despite improvement in educational and social parameters over the time. This highlights the need to increase the awareness of epilepsy among general public to reduce the stigma and disability due to epilepsy. Recently, Government of India has included chronic epilepsy in its draft bill of Rights of Persons with Disabilities. [94]


   Organization and Delivery of Services Top


Limited data from India clearly indicate that epilepsy is a major public health problem with huge burden and psychosocial impact. Undoubtedly, significant efforts are required towards prevention, care, and rehabilitation in India at a time when scientific knowledge exist that epilepsy is preventable and manageable. This emphasizes the need to take up epilepsy as a priority on a large scale. Existing services for PWE are largely urban-based, even though epilepsy care is getting expanded to rural areas; however, even available services are underutilized. The lack of awareness, extreme shortage of specialist or trained manpower, and inadequate skills of healthcare providers in managing epilepsy poses a major challenge in organizing services for PWE. The stigma and its subsequent impact on employment, education, and marriage emphasize the importance of counseling and vocational rehabilitation besides the need to promote awareness and upscale the capacity of various cadres of health providers. Thus, there is a need to conceptualize a comprehensive preventive, promotive, curative, and rehabilitative healthcare delivery model to reduce the treatment gap in epilepsy; most importantly implementing the same and it is indeed a challenge.


   Integrated Approaches for Epilepsy Prevention, Care, and Rehabilitation Top


Focus on prevention

A significant proportion of epilepsy in India occur due to adverse perinatal events and neonatal infections and majority of the infections that cause epilepsy in developing countries are preventable through improved obstetric and neonatal care, immunization, vector control measures, and improved food hygiene. Thus, active disease surveillance becomes critical for planning appropriate preventive/control measures. Besides several new initiatives in the areas of maternal and child health, control and prevention of childhood infectious diseases, prevention of communicable diseases like malaria and others, many effective solutions to prevent road traffic injuries, work place injuries, and other injuries can significantly contribute for epilepsy prevention. The entire National Programme for Prevention and Control of Cancer, Diabetes, Cardiovascular diseases And Stroke (NPCDCS) program can address epilepsy secondary to some metabolic conditions if prevention becomes central focus. Sensitization/orientation of administrators and professionals in various national programs for prevention and management of epilepsy would go a long way in control of epilepsy during the days to come.

Emphasis on care

With shortage of specialist manpower and health facilities for epilepsy, there is a need to organize services based on a public health approach model by using existing healthcare facilities. [95] The immediate focus should be on capacity building of various healthcare providers, applying appropriate technology for diagnosis, ensuring uninterrupted drug supply, and creating awareness. In recent years, there is a strong thrust to develop a national epilepsy control program and it is envisaged that India would have a national epilepsy control program in the coming years to close the wide treatment gap. [96]

Various approaches have been attempted by India and other developing countries to deliver epilepsy services in the community with need-based specialized diagnostic techniques and surgical facilities. [97] Some of the notable approaches are fixed satellite clinic model of apex institutions, [98] camp approach (specialists or trained physicians engaging in rural camps), [99] mobile clinic approach (single visit by neurologist), [100] rural approach (integrating epilepsy care in primary healthcare), [101] general practitioners approach (training general practitioners in epilepsy care), [102] key informant approach (availing services from school teachers and other key leaders of community in identification and education of PWE and their families), [103],[104] community health worker approach (for identification, referral, and follow-up), [17] and community-based rehabilitation model. [4]

The community-based rehabilitation model of care had resistance due to categorization of PWE as having disabilities, while the camp approach and satellite clinic model had inherent problems of stigma, difficulty in follow-up, and the failure to ensure uninterrupted supply of drugs. These initial problems can be overcome with community involvement. Though these models could be cost-effective and complementing, no large-scale replication and evaluation studies have been reported till date to examine its cost effectiveness in India.

To circumvent these challenges, a decentralized model of epilepsy care at the district level with two essential parallel and complementary approaches, namely "center to periphery" and second, "periphery to center" was proposed. [95] This model had envisaged the district medical officer as the core person, neurologist as a nodal person, and the primary health center medical officer as the delivery agent. In line with this, Tripathi et al., have highlighted the complementary bottom up training and case finding model with top down information, education, and communication (IEC) delivery model. [96] National epilepsy network and national epilepsy surgery support activity was proposed to provide proper guidance and support for managing difficult cases and reduce the surgical treatment gap in India. [53],[105]

Strengthening and capacity building of primary care settings for managing epilepsy, [106] implementation of telemedicine facilities in managing complicated cases of epilepsy, expanding the scope of surgical interventions and therapeutic drug monitoring, and provision of emergency kits in different settings for management of status epilepticus were suggested for prevention of unnecessary referrals and better utilization of services.

A recent study by Dash et al., has demonstrated the effectiveness of health education in improving drug adherence and self-management skills of PWE with low educational background. [107] This highlighted the importance of including educational program in providing holistic management of PWE, irrespective of their educational status.

While the need for an independent epilepsy control program has been articulated by professionals, there is urgent need for integrating epilepsy prevention, early diagnosis, management, and rehabilitation in the existing programs. As neurological diseases are considered in the larger spectrum of non-communicable diseases and there is a growing elderly population, integrating epilepsy care with the upcoming National Program for Health Care of Elderly (NPHCE) and NPCDCS and in trauma care appears to be some promising strategies in effective reduction of epilepsy burden. [108],[109]


   Need for Rehabilitation Top


Psychosocial and vocational rehabilitation is one of the immediate needs of PWE to improve their employment opportunities through a skill-based approach in a non-stigmatizing environment. Increasing awareness about epilepsy through audio-visual communication channels, street play models, and exhibition models, especially in schools, workplaces settings, and community provides immense scope for improving the life of PWE. An integrated team of psychologist, social workers, health workers, and primary care doctors along with along with neurologist trained in epilepsy care are urgently required. A greater involvement of non-governmental organizations (NGOs) is required to facilitate the larger integration of PWE into the mainstream society. Thus, addressing both demand and supply side becomes essential to inform, educate, and motivate people and professionals from varied background through multidisciplinary approach. [110] Diploma in epilepsy care, a correspondence course initiated by IEA would be a step in this direction to increase the capacity. [111]


   Summary and Conclusion Top


Even though epilepsy is an eminently preventable and treatable condition, it still remains a major public health problem due to high stigma, wide socioeconomic inequity, huge treatment gap, and the poor epilepsy healthcare delivery system in India. Thus, besides considering the epidemiological aspects, the psychosocial and economic impact of epilepsy becomes more crucial while addressing the problem of epilepsy. It is clearly evident that epilepsy is a complex public health problem that requires integrated multidisciplinary approach. Time has been lost and rather than focusing on pilot projects, a sustainable, cost effective, and comprehensive public health response is required to address the challenge of epilepsy in India. Neurologists, public health professionals, psychiatrists, psychiatric social worker, psychiatric nurse, and program managers need to join hands for prevention, improved care, and rehabilitation of PWE in India.

 
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