More than 50 million people around the world have epilepsy; about 80% of them live in lower- or middle-income countries, where treatment can be difficult or impossible to receive. The percentage of people with epilepsy who are not receiving treatment is known as the treatment gap; this gap can be above 90% in some countries.
Many factors contribute to the treatment gap, including medication access and affordability; primary-care physician education; stigma, which is often rooted in a lack of epilepsy awareness; and people’s understanding of the concept of chronic disease. In some areas of the world, people see epilepsy as a spiritual affliction, rather than a medical one. In addition, many are familiar only with acute conditions (such as infections) and not with the concept of chronic disease. These perceptions create barriers to medication adherence, even in places where medication is consistently available.
Most interventions to reduce the epilepsy treatment gap include some form of community education or awareness to help people understand that epilepsy is a medical condition. The interventions also attempt to teach that anti-seizure medication is not a cure and it must be taken every day, usually for the rest of someone’s life.
Nearly all community-based interventions involve primary care physicians as the focal point, as many lower- and middle-income countries have only a few (if any) neurologists, concentrated in the largest cities. Even in high-income countries, primary-care physicians are a crucial part of epilepsy treatment. In the United States, about 40% of people with epilepsy get most of their care from a primary-care physician. However, primary-care physicians receive minimal, if any, education about epilepsy; most medical schools devote less than an hour of time to the topic.
Of course, physician education is not effective without a steady and affordable medication supply. Some interventions attempt to address this organically, while others provide no-cost medication as part of the project.
A recent meta-analysis of 24 community-based interventions offered a summary of their results, lessons learned, and recommendations for future endeavors.
While each intervention must be tailored to the region’s needs and culture, interventions can inform and improve one another through careful data collection, common data elements and expanding the outcomes they study, suggested review authors. Interventions are limited most obviously by funding, but also by human resources, corruption, war and unrest, and other local factors.
Medication provision
Most interventions used phenobarbital as an anti-seizure medication, though some included other medications (such as carbamazepine, valproate, and phenytoin).
Medication was provided cost-free in most settings. One to two years after cost-free provision, seizure freedom ranged between 25% and 73%. Attrition rates also ranged widely. No study reported on the impact of medication provision on quality of life or comorbidities.
Medication adherence
The review found that adherence reinforcement probably improves seizure control, but no evidence of an impact on certain adherence-based outcome measures (such as serum levels) was found.
Some examples:
- In China, after six months of treatment with phenobarbital, people were randomized to usual care or an educational and behavioral intervention for medication adherence. Seizures remained unchanged in controls; 18% of the intervention group experienced at least a 50% reduction in seizures.
- In Kenya, people attending a workshop on medication adherence did not have subsequently higher serum medication levels, compared with those who did not attend.
- In Zimbabwe, providing individual education on adherence through written material in the local language was associated with a drop in no-show visits (22%), compared with a control group (56%).
Primary health care provider education
Several studies educated primary health care providers on epilepsy diagnosis and treatment. The outcome measures, however, were more generalized, and not directly related to seizure control or quality of life.
- In Zimbabwe, a one-time education session increased the number of clinic patients by 35% over 6 months.
- In Nigeria, a World-Health-Organization-based program increased the number of encounters in primary-care clinics.
Studies also found that after an educational intervention, providers’ epilepsy knowledge declined after about 9 months, indicating the need for sustained educational initiatives.
Community awareness
Some interventions have attempted to increase community awareness of epilepsy through educating key community members or forming support groups of people with epilepsy that provide networking and outreach activities.
The review noted that the impact of community education alone is difficult to distinguish, given that is usually synchronized with other approaches (such as provider education and medication provision). Nevertheless, the authors stressed that community awareness has been an integral part of national or regional demonstration projects.
A number of programs have educated people about the medical nature of epilepsy and the need to take medication every day, rather than only for a short time.
Limitations
Most intervention studies did not address (or only fleetingly addressed) the existing treatment gap, epilepsy-related mortality, or the burden of comorbidities. No studies examined quality of life, or mother/child outcomes in women with epilepsy.
The review initially identified more than 350 studies; only 3 were randomized, controlled trials. Such trials are difficult to conduct in community care—and even if they are successfully completed, the results might not translate into practice.
Randomized trials: Yes or no?
Rather than a focus on randomized, controlled trials, “What is truly required are implementation research initiatives that explore different aspects of care provision and the health system, in light of the many health systems, policies and socio-cultural characteristics found worldwide,” said Gagandeep Singh and Ley Sander, authors of the review. Singh is professor of Neurology, Dayanand Medical College, Ludhiana, India; Sander is professor of Neurology and Epilepsy at the Institute of Neurology, University College London, UK.
“Randomized controlled trials can provide top-level evidence; however, we should always seek a balance of the scientific rationale and practical rationale,” said Ding Ding, associate professor and neuro-epidemiologist at the Institute of Neurology, Fudan University Huashan Hospital, Shanghai, China. “A study design should be tailored to the real conditions and situations where the program is being conducted.”
“Randomized controlled trials are meant for an established environment, over which you have control. Out there in the world, we don’t have control,” said Li Min Li, professor in the Department of Neurology at the State University of Campinas, Brazil.
Given the time and resources put into community-based programs, the knowledge gained should be useful under real-world conditions. “There’s a relatively new field, implementation science, that considers how to translate the knowledge we gain through research to the real world,” said Li. “I think this is an important area for those interested in building an evidence base for community-based programs.”
Sustainability
No reports explicitly described plans for program sustainability, though reports from Ding’s demonstration project in China offered implicit evidence of its sustainability and scalability.
“Sustainability requires ongoing financial support, as well as policy support from the government,” Ding said. “The goal is to show policymakers the benefits for people with epilepsy—the medical benefits, as well as easing the economic burden of people with epilepsy and improving societal harmony. This is not easy because epilepsy is a relatively ‘small’ disease, compared with other neurological diseases, so it may not get a high priority.
Li suggested that sustainability requires more than government support. “To establish sustainability, we have to bring the population together,” he said. “For the past 20 years, I’ve been telling governments that they’ll save money with community-based programs and it’ll be a win-win. They don’t listen. One challenge is that the system changes every few years, so you have to go back and constantly try to convince new people. You get a little gain here and there, but no real change.”
Ding said that support can be found from other stakeholders, but “the chances of finding such support depend upon the amount of effort we are willing to make.”
Sustainability also implies that people understand the importance of ongoing treatment. Many programs have lasted several months, but once medication runs out or is relatively difficult to get – someone may need to travel a full day to get a month’s worth of medication. It’s easier to visit a traditional healer, and if the person with epilepsy is not dedicated to taking their medication they will not try hard to do so. Supply is a major issue for a lot of grant-funded programs that last for a limited time – when the funding runs out, so does the treatment.
Recommendations
The review recommends that future interventions consider not only seizure control and medication adherence as outcomes, but also quality of life, epilepsy-related mortality, comorbidities (such as depression and suicidality), maternal and fetal outcomes in pregnant women with epilepsy, and bone health.
The authors also call for documenting the proportion of people who are referred from primary care to higher-level care, attrition rates, and before-and-after treatment gap measurements. Implementing quality measurement sets using common data elements can improve care provision for epilepsy. (See table for a summary of recommendations.)
Any community-based program must target multiple domains and stakeholders, said Sander and Singh. “There is little point in improving provider knowledge about epilepsy if medication supplies are inadequate or erratic,” they said.
Multidimensional studies are naturally more complex than those targeting a single issue, but Li said it is important to “tackle every dimension possible.” He also noted that because phenobarbital is so inexpensive, it has become unprofitable. “We need to consider other medication options,” he said.
“There is no universally perfect model,” said Singh and Sander. “The best model is one that is totally embedded in the existing local primary care structure; it also must be complementary to existing infrastructure. The model also must be attuned to local cultural beliefs and take local health-care-seeking behavior into account. Moreover, we also must understand the limitations to its implementation, such as limited funds, limited human resources, and corruption.”
Focus on the positive
Stigma influences the treatment gap in many countries. In places where people with epilepsy are shunned, isolated and even abused, few want to be open about their seizures. Stigma also can lead to the loss of educational or job opportunities, as well as a chance to have a relationship or get married. In countries where epilepsy is viewed as having supernatural causes, people visit traditional healers rather than physicians, and may never receive medication.
Li suggested that society is overdue for a shift in how it views people with epilepsy. “I think we should focus on the positive: Some people with epilepsy have productive jobs and live productive lives,” he said. “They have seizures, which cause so many changes in their body and mind, and they have to go on as if nothing has happened. They endure prejudice and must deal with other people’s fears, and they struggle to make their lives productive. I think their experiences and characteristics should be seen as strengths for employment, not as weaknesses.
“Instead of pitying people with epilepsy, we should pay them respect,” said Li. “They live through the stress of the unknown every day, and they keep going.”
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Founded in 1909, the International League Against Epilepsy (ILAE) is a global organization with more than 120 national chapters.
Through promoting research, education and training to improve the diagnosis, treatment and prevention of the disease, ILAE is working toward a world where no person’s life is limited by epilepsy.
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