Epigraph Vol. 20 Issue 2, Fall 2018
Home-based care for epilepsy in India: What can we do with what we have, where we are?
“What we can do, we must do.” — Theodore Roosevelt
Bridging the wide treatment gap for epilepsy in disadvantaged communities in low- and middle-income countries is a daunting task. Barriers to the provision of care are plenty, but have to be overcome. Indeed, a small number of interventions have taken place from time to time in different parts of the world. Some of the earliest attempts were interim measures by Western medical missionaries, and so, short-lived.
A demonstration project in China was notable in terms of its extensive coverage, sustainability and rigor. The intervention took place between 2001 and 2004 and resulted in a reduction in the treatment gap for active convulsive epilepsy from 63% to 50% and an improvement in adherence from 25% to 39% (1). Evidently, there still remained a huge proportion in the community who remained either untreated or, if treated, poorly adherent to epilepsy medications. Despite the provision of phenobarbital on a cost-free basis, still 21% of the people stopped treatment either because they felt that their seizures had remitted, or because they felt that their medicines were not working well enough (2). It is unclear whether ongoing, direct patient education would have improved treatment compliance.
To build on the observation that a more proactive approach could improve the treatment gap, we proposed a complementary approach, in which primary healthcare personnel provide epilepsy medication, education and counseling about social functioning, stigma, epilepsy self-management and adherence monitoring at the homes of people with epilepsy on a monthly basis (3).
We are testing such an approach in a community-based, cluster-randomized trial in India. The communities selected were decidedly impoverished. Trial participants were enrolled following a community screening campaign for epilepsy facilitated by Accredited Social Health Activists (ASHA), community health workers in India.
Accredited Social Health Activists are young (25 to 40 years old) female residents of communities with 1,000 -2,500 people in villages and marginalized areas in cities of India. There are currently about 900,000 ASHAs in India. They work mostly on a voluntary basis and are entrusted with the tasks of promoting healthy behaviors in the community and assisting in accessing good health care. Ensuring institutionalized deliveries and timeliness of vaccination in children are among their activities. It remains to be seen if they can be entrusted the additional responsibility of supplying epilepsy medications, monitoring treatment adherence and bettering epilepsy self- and stigma management.
In all, 65,350 individuals were screened. Geographic clusters of subjects with confirmed epilepsy were randomly allocated to either home-based care or a control arm, which received usual clinic-based care at a Government District Hospital. The trial, called Community Interventions for Epilepsy (CIFE), is ongoing and supported by the Indian Council of Medical Research.
The Chinese demonstration project used phenobarbital alone in the management of active convulsive epilepsy. While phenobarbital has certain advantages over other epilepsy medication, we have used a wider, more cost-effective and pragmatic range of medications, composed mostly of those epilepsy medications on the World Health Organization essential drugs list: phenobarbital, carbamazepine, lamotrigine, phenytoin, valproate and ethosuximide.
Home-based care for epilepsy has several purported advantages. The provision of medications at home reduces direct non-medical and indirect costs of epilepsy treatment in the form of travel expenses and wages lost when a patient visits a hospital. Family stakeholders can be easily engaged in the home environment, where issues of stigma and social concerns such as schooling, employment and marriage can be addressed. Most importantly, home-based care may reduce the treatment gap and improve adherence by delivering medication and motivation to no-shows and drop-outs.
Sensitization of the primary care personnel is an integral component of the project. Three levels of sensitization are implemented for primary care physicians, auxiliary nurse midwives and ASHA workers, in reducing levels of complexity. Likewise, community sensitization is in place, in the form of generic and targeted campaigns spearheaded by ASHA workers to dispel myths and misconceptions and to abrogate stigma.
There are an estimated 8 million people with epilepsy in India. The first challenge is to provide reasonable treatment by ensuring a continuous supply of essential epilepsy medicines to all. The next level of challenge is to overcome the stigma associated with epilepsy. Stigma continues to haunt marriages, schooling and work in India. Laws related to driving are antiquated. A lot needs to be done!
We will keep you posted with the results of the trial as these become available. We must do what we can do for people with epilepsy in impoverished communities.
Gagandeep Singh, Professor of Neurology, Dayanand Medical College, Ludhiana, India; Hon. Senior Lecturer, Department of Clinical & Experimental Epilepsy, Institute of Neurology, Queen Square, UK
Meenakshi Sharma, Scientist F, Noncommunicable Diseases Division, Indian Council of Medical Research, New Delhi, India
Ley Sander, Professor of Neurology and Epilepsy, Institute of Neurology, University College London; Clinical Honorary Consultant Neurologist and Clinical Lead for Epilepsy, Institute of Neurology, Queen Square, UK; Chalfont Centre for Epilepsy, UK; Stichting Epilepsie Instellingen Nederland, Heemstede
- Wang W, Wu J, Dai X, Ma G, Yang B, Wang T, Yuan C, Ding D, Hong Z, Kwan P, Bell GS, Prilipko LL, de Boer HM, Sander JW. Global campaign against epilepsy: assessment of a demonstration project in rural China. Bull WHO 2008;86:964-969.
- Wang WZ, Wu JZ, Ma GY, Dai XY, Yang B, Wang TP, Yuan CL, Bell GS, de Boer HM, Sander JW. Efficacy assessment of phenobarbital in epilepsy: a large community-based intervention trial in rural China. Lancet Neurol 2006;5:46-52.
- Singh G, Sharma S, Bansal RK, Setia RK, Sharma S, Chowdhury A, Goraya JS, Chatterjee S, Kour S, Kour M, Kalra S, Sander JW. A home-based, primary-care model for epilepsy care in low and middle income countries: basis and design.
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