Epigraph Vol. 25 Issue 1, Winter 2023

Moving epilepsy care closer to home: Dr. Gagandeep Singh and Dr. Meenakshi Sharma

Reported, edited and produced by Nancy Volkers, ILAE communications officer

Cite this article: Volkers N. Moving epilepsy care closer to home: Dr. Gagandeep Singh and Dr. Meenakshi Sharma. Epigraph 2023; 25(1): 74-80.

Can bringing epilepsy care to people’s homes improve outcomes? A cluster randomized trial compared home care with community health workers to standard clinic care in India. Twenty-four clusters, each comprising 10 people with epilepsy, were randomized to either home-based or clinic care. Home-care recipients had better medication adherence and fewer seizures, compared with clinic-care recipients. Over two years, significantly more people in the clinic care arm dropped out of the trial.

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Podcast Transcript

Access to care affects people with epilepsy worldwide. Bringing care closer to home can help—but what about bringing care inside the home?

In this episode we review a recent randomized trial comparing home-based epilepsy care to clinic-based care. We spoke with two of the authors about the study’s results and the implications for models of care that could help to shrink the epilepsy treatment gap, particularly in lower-resource countries.

Headshot of Dr. Meenakshi Sharma
Dr. Meenakshi Sharma

Dr. Meenakshi Sharma: I’m Dr. Meenakshi Sharma and I work with the Indian Council of Medical Research, which is a premium research organization in the country, and at ICMR we undertake research activities in almost all diseases. We do only health research and I look after cardiology and neurology. So we have been doing work on population based registries, some epidemiological surveys, as well as we are trying to build up care models which are appropriate for our country.

Dr. Gagandeep Singh: My name is Gagandeep Singh. I’m a neurologist, and I’m a professor of neurology at one of the medical schools in Ludhiana in north India. I’m also the PI, the principal investigator, of this project, which was funded by the Indian Council of Medical Research, of which Dr. Meenakshi is one of the lead scientists.

Ours was a cluster randomized trial of home-based primary care for epilepsy versus clinic-based care for epilepsy. People in the clinic-based arm attended clinic as usual, they were of course provided free medicines. People in home care were cared for by community health workers and nurses who not only provided medicines, they also did a lot of counseling including stigma management, epilepsy self-management, first aid, and adherence reinforcement. This actually improved outcomes – there were much less people in the home care arm that dropped out of follow up. Their adherence was significantly better, and their seizure control was also significantly better. Therefore, the outcomes, the disease-specific outcomes are certainly better with home care. Getting treatment closer to home, or better still getting treatment at home, certainly improves outcomes in epilepsy.

We know that there are many countries, resource-limited countries, where there is an immense treatment gap. Now there have been a number of systematic reviews about the treatment gap across many different countries. Generally speaking for instance in the United States, the epilepsy treatment gap is less than 10%. But there are many countries, India included, where estimates of the treatment gap are something around 70%. They’re better than before, what they were 10 years ago, but still probably about 70% of people with epilepsy go untreated. And there are several reasons for this. People often have poor health literacy, they cannot afford medicines, there are economic reasons for this, there is poor availability of specialist resources, so neurologists, the number of neurologists is very limited. These are some of the reasons why people with epilepsy are unable to access treatment.

So we thought of this trial or this study where we wanted to look at whether by getting treatment closer to the homes or at the homes of people with epilepsy, would this actually reduce the treatment gap and improve some of the epilepsy outcomes?

So could you explain a little bit about how the study worked? How did you recruit people to join the study, and how did you manage the home care and the clinic care?

Dr. Gagandeep Singh: We decided to do this study in the district of Ludhiana, in north India, and which has a huge population, it’s one of the most highly populated cities in the country. It’s an industrial city where people actually come from far and wide to work here. But their living conditions are not very good. Most of the people are poor. So this was our site of the location of the study.

Gagandeep Singh
Dr. Gagandeep Singh

And before we actually began the study, we did a door-to-door survey in several different clusters across the city. And these clusters were of 2,000 people each. We expected an epilepsy prevalence of somewhere between 5 to 10 per 1,000. During door-to-door screening we identified people with epilepsy. Once we identified people with epilepsy, we then offered them, invited them for neurological evaluations which were done by study neurologists, and that included electroencephalographic examinations, that included MRIs, so that we would have a firm diagnosis of epilepsy on all of the subjects.

Once these were done, then we invited these people to take part in this community-based trial where they would be randomized either to home care or to clinic based care. And the randomization was done at a cluster level, not at an individual level. So entire clusters of population-based units of 2,000 each were randomized either to clinic-based care or home-based care.

In the clinic-based arm, which was the comparative arm, they attended the district hospital. There is actually no neurologist in the district hospital in the city of Ludhiana. In fact in most of the cities, the district hospital, which is also known as the civil hospital, does not have a neurologist. But our health minister said that for this trial, you can debut one of the neurologists to go there once a month, once a week, actually, and see all the patients with epilepsy.  So this was the usual clinic-based arm. 

But in the home care arm, what we did is we had workers who were of the same qualifications as ASHA workers. ASHA workers are community health workers, and they are the backbone of the community health program of India. They go home to home. Their main aim, their main function is to look after and motivate people, women, in the reproductive age group to come and get deliveries in facilities or in hospitals, and not to get any home deliveries. The other job is to look after immunizations. So it was like adding a little bit of epilepsy work to their, to their usual work. 

And we trained them over a short period of time so that they can go from home to home and visit the homes of people with epilepsy. Number one, provide them with the medicines they require. Number two, uh, to counsel them and to provide guidance regarding stigma, self-management of epilepsy, and also counsel them on adherence. You know, adherence is extremely important in epilepsy, and it is one of the crucial pillars of the success of treatment. And they would do this during monthly visits. And they were given seizure diaries and they would record the occurrence of seizures within the past one month which all patients would do themselves and then pass it on to the community workers.

So this was the basic design of the study and we followed them over 2 years.

Two years. And what were the primary outcome and any secondary outcomes?

Dr. Gagandeep Singh: So our primary outcome was medication adherence, which was based on pill counts. We argued that whatever the ASHA workers or the community health workers do, they are basically going home to home, visiting people with epilepsy at their homes, and providing counseling so that they are able to adhere to their medicines and they do not miss out on medicines and therefore do not have any breakthrough seizures. 

And I think you said in the paper you considered someone to be adherent if their pill counts were within two, plus or minus two of what they would have been if they’d taken them every day?

Dr. Gagandeep Singh:This is what has been done in previous studies and the other reason for that is that epilepsy is somewhat different, you know. In conditions like hypertension, for instance, the gold standard, the bar for adherence is something like 80%. So if people have their medicines 80% of the time their blood pressure would be well controlled. But epilepsy is one condition, if they miss even a single pill, they are at risk – not everyone has a seizure but if someone misses a pill, even one tablet, he can have a seizure. So in this way epilepsy is different and that is why we use this stringent criteria of pill counts with even two days difference in pill counts would constitute non adherence.

So what did you find in terms of adherence – were there differences in the two arms?

Dr. Gagandeep Singh: The most important difference was in the clinic-based arm, people would come actually to the clinic, they would be dispensed the medicine, the medicines were provided free of cost to them, but they had to come once a month to get the medicines, and then the neurologist would see them, they would discuss their problems, and then prescribe the medicines depending upon their seizure control side effects, et cetera, et cetera. So we had a huge attrition – a large number of people in the clinic based arm were lost to follow up. In the clinic-based arm we lost 37% of the people. They were lost to follow up. They just stopped coming to the clinics. In the home-based arm, it was just about 19%. So many more people exited the trial in the clinical based arm as compared to home based arm. That was one of the important findings. This also impacted our results because there was differential attrition between the two arms. 

But it clearly tells us that people who have to come and collect their medicines, even if they’re free of cost, they will still not come to the clinics, you know? Because they have to come to the clinic so that often might cost a little bit, but more often what it does is people lose one day of wages. And that’s a lot for them actually. So, in comparison when the medicines are provided at home, their adherence is better, their compliance is better, they adhere to treatment, it’s much simpler for them to take medicines. We also documented that people in the home-based care arm were more adherent, they were 1.79 times more, and this was statistically significant in a logistic regression. And their seizure control was also much better.

Dr. Meenakshi Sharma:The problem with a country like ours is that our public health system was more geared toward looking after infectious diseases rather than chronic diseases. In hypertension control, as Dr. Gagandeep has talked about epilepsy, we found the same thing – the patients who are reaching the district hospital, their blood pressure was not controlled as compared to the patients which were coming to primary health care centers or to health and wellness centers. At health and wellness centers our control rates reached around 60%-65% kind of thing whereas in district hospitals it was around 35%. So I also agree with him when he says that the patient loses the wages, he has to travel a long distance to a district hospital to come and take treatment. So we have to provide a way by which the drugs can be provided nearer to the house of the patient. 

One way is what Dr. Gagandeep, what this study has done, in this study what we did was using ASHA workers to take medicine to the patient’s home. In hypertension control initiatives, we calculated the amount of drug which should be available in the facility using a forecasting method which was based on morbidity and as a result we made the drugs, we had a very simple protocol, we had 2 or 3 drugs instead of having so many antihypertensives. And the procurement became easier and we were able to supply to primary health centers and health and wellness centers. A minimum supply of 30 days was ensured and that amount of drug was given to the patient. Instead of giving them 7 days drugs we were giving them 30 days. 

I think the treatment of epilepsy patients is also showing us that this is the way we will be able to provide care to our chronic disease patients, whether it is epilepsy, hypertension, or diabetes. It’s a very good model which he has shown. There are issues. We do not have too many neurologists. The drug costs are a challenge but I think the drug costs for epilepsy, we have a number of drugs on the EDL (essential drug list) list, and some of the drugs which are not on the WHO list have been made available by the government. But we have to make a system to make sure that these drugs are available at our primary health care center level. If they become available, then obviously adherence to the drugs is going to be much better than being available at the district hospital level.

I wanted to ask a little bit about the number of drugs and the primary health focus. There are more than two dozen antiseizure medications, um, ideally available. Primary health practitioners often don’t have the education to decide which one to use or which one to try. Was that, could that be a challenge if you wanted to roll this program out further? For example, it sounds like one of the challenges and I think mentioned in the paper was primary health practitioners, they just don’t get that kind of training and there aren’t enough neurologists, so relying on primary health would mean some sort of investment in education or training on that level. Can both of you maybe speak to that?

Dr. Meenakshi Sharma: This is a challenge definitely; this is a challenge but on the other hand, if we have a system of reference and back reference. If you are suspecting a patient at the primary care level and shift that patient, transfer that patient to the district level, let the specialist diagnose and start the treatment. And later on, once the patient is stable, he can be shifted back to the primary health level, where the physician is definitely trained to look at the symptoms, to look at other smaller things. But drug dispensement will definitely occur at the primary health level. It becomes easier in that fashion. And that is the model which we I told you it’s something we have tried for hypertension for the first time, and it works. So maybe for others we are hoping that the same, that same model will be replicated but obviously with minor modifications, some cuts here and there, we can do as similar kind of thing for epilepsy too. Dr. Gagandeep can…

Dr. Gagandeep Singh: Yes, I completely agree with Dr. Sharma that treatment really needs to come closer to home. How close it comes that’s a different matter but it needs to come closer to home and that might improve some disease-specific and patient outcomes. That’s one thing. And I think what you’re saying is extremely important – the primary care education with regard to epilepsy is extremely, extremely important and the WHO as part of the Intersectoral Global Action Plan emphasizes that by the year 2030 we need to you know reduce the treatment gap 20%, we need to reduce the diagnostic gap to even less than that and we need to ensure that 70% of people with epilepsy are well controlled. If that has to happen in countries such as India, but more so in countries for instance in Africa which are really low income countries, and there are very few specialists, so in these kind of countries I think it’s extremely important that primary care personnel need to be educated about epilepsy. In certain African countries for instance, it’s the nurse: There are no doctors in the primary health care centers and the primary health care centers are manned only by nurses.

The ILAE has come up with the International League Against Epilepsy primary care curriculum and this was published just a couple of months ago. This was work from at least two years of the Primary Care Task Force of the International League Against Epilepsy and it is a detailed curriculum for what is really required for managing epilepsy in primary care, as opposed to what is required in specialist care.

So I’m interested in talking a little bit about patient health literacy because that was mentioned as one of the challenges of completing this study. Are there initiatives under way to address that or any discussions of how that might be handled, particularly in areas like the one where this study was done? Their health literacy levels are very low and perhaps as in other areas of the world, they associated medication with acute illness, so the concept of having to take a medication for the rest of their lives in a preventive capacity maybe is just not something that’s familiar.

Dr. Gagandeep Singh: So I think you actually hit the nail on the head, you know. It’s that most people in disadvantaged communities, in resource-limited communities, think of medicine or health care as something that is basically meant for acute conditions or conditions which are extremely serious. So people will just procrastinate, just not take treatment, and then once the things go beyond a certain limit, then they will go to hospital to seek care. Or, you know for instance in a case of someone with epilepsy, the person has acute seizures or status epilepticus, will go to the hospital, go in get treated for status, get acute treatment for status and then subsequently what he will do is come back home, and once he comes back he or she comes back home, they will take treatment for some time and then stop taking treatment. Then after a few weeks or months or years, again they have seizures and again they have problems. 

So I think that’s a problem, a perennial problem, and that’s something that has to be dealt with. For instance, in our study 90% of the people, more than 90% of the people their education level was less than high school. I think treatment and health literacy has a lot to do with basic levels of education, as basic levels of education improve, probably their health literacy and treatment literacy will improve. Are there any other interventions at a governmental level about how to improve the health literacy, how to improve the people’s knowledge about disease and health and preventive health in particular, in this setting where their basic education is extremely low. I think that’s the challenge.

Dr. Meenakshi Sharma: I agree with you, I definitely agree with you Dr. Gagandeep. That’s a major challenge. Once even we have set up the facilities as a health center, we face the challenge that the patient either doesn’t come to the hospital to take the necessary treatment or get the diagnosis and he doesn’t adhere to the treatment also. We do have programs, for example the national program for cancer, cardiovascular disease and stroke. This is a program for chronic diseases and this program talks about prevention in the community. However, I still feel that we have lots to do in this area. We have some examples which are coming out from studies, but how do we translate them into a program? That’s another challenge. Upscaling, you will agree with me upscaling is not simple mathematics. There are many challenges when we do the upscaling.

With epilepsy I find that they go for traditional healing too. They go to the traditional healers and that complicates attrition much more. We need to undertake some research study having a social scientist with us to understand what is happening in the community and how to change those health seeking behaviors. That’s a big, really, really big challenge not only for epilepsy but for all NCDs [non-communicable diseases] also.

Is there anything else that either of you wanted to mention about the study or implications or treatment gap challenges?

Dr. Gagandeep Singh: Yeah. This is one of the methods to reduce the secondary epilepsy treatment gap, which the primary epilepsy treatment gap, improve adherence, improve outcomes. It’s not to say that this is the ideal model – we need to look at the cost implications of this, which we are actually doing, and which will probably be another paper. And it’s not to say this is the one key that fits all, one solution for every problem, no. It’s probably not that. 

Different places are different – even within the country I’m sure there must be different settings and different geographical as well as sociocultural settings as in other countries, so one has to find out what is the best way of addressing the epilepsy treatment gap, decreasing epilepsy burden, decreasing epilepsy morbidity and mortality which is indeed considerable. And this is just one of the methods – we need to look at it from a wider angle, which probably includes more specialist involvement, primary care education, community awareness- there are so many things that need to be built up into a comprehensive model of care for epilepsy if we are going to reduce the ep burden and the treatment gap. Dr Sharma if you would like to add.

Dr. Meenakshi Sharma: I fully agree, fully agree with you, Dr. Gagandeep, that the type of diversity which we see in our country will require very different kinds of models, which suit different areas. It’s not, one model does not fit, is not going to fit in every place. And for areas where we have specialists, we have to think in a hub and spoke kind of model. For areas where there is no nearby medical college or district hospital, we have to look at different kinds of challenges and build up a model accordingly.

What I think, what this paper, this project has done, this has opened our understanding of how things work in our system. And I’m very sure that we will be able to come up with two or three different models which are going to cater to the regional variations in our country. But I do have faith that if you provide care at a facility, then the population ultimately will start understanding that there is some treatment available for epilepsy. That’s a message which has to go to the community, and epilepsy is treatable, you have to visit the facility, you have to adhere to the drugs, if those kinds of messages are populated in the community, then things will start working. But this is going to be a long journey.