Andrew N. Wilner, MD

Disclosures

May 10, 2012

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Hello. I am Dr. Andrew Wilner, reporting from the 64th Annual Meeting of the American Academy of Neurology, here in sunny New Orleans, Louisiana.

At this meeting, there are more than 2300 scientific abstracts. It is a great venue for a neurology conference. The hotels, the conference center, the restaurants -- everything is in close proximity, very convenient. And it is the perfect venue for learning about neurology, so much so that there are almost 12,000 attendees here in New Orleans.

I am going to talk about a few of the recent developments in epilepsy, and clearly the most important one at this meeting was presented at a hot topics session earlier this week. This was a special presentation about a report from the Institute of Medicine (IOM).

The IOM is a branch of the National Academy of Sciences. The report was initiated 2 years ago by 24 organizations, including the American Epilepsy Society; the Epilepsy Foundation; the International League Against Epilepsy; Dravet.org; Citizens United for Research in Epilepsy; Vision 20/20, which is a group of nonprofit organizations; and 3 federal agencies, all devoted to moving the epilepsy field forward. This report is available online and it was released on April 1, 2012.[1]

At this presentation, Dr. Joe Sirven, Professor of Neurology, Mayo Clinic Arizona, presided and Dr. Frances Jensen, the new President of the American Epilepsy Society, also spoke. In addition, there was a panel to help explain the 13 recommendations that the IOM designed to help improve care for all people with epilepsy:

  1. Validation and implementation of standard definitions and criteria for epilepsy case ascertainment, healthcare and community services use, and cost and quality measurement

  2. Continuation and expansion of collaborative surveillance efforts

  3. Development and evaluation of prevention efforts for epilepsy and its consequences

  4. Improvement in the early identification of epilepsy and its comorbid health conditions (We are going to talk more about comorbidities in a little while.)

  5. Development and implementation of a national quality measurement and improvement strategy for epilepsy care

  6. Establishment of epilepsy center accreditation and an epilepsy care network

  7. Improvement in health professionals' education about the epilepsies (This is another term that is very important; in the future we are going to be talking about the epilepsies, not just epilepsy.)

  8. Improvement in the delivery and coordination of community services

  9. Improvement in and expansion of educational opportunities for patients and families

  10. Provision of information to media to improve awareness and eliminate stigma

  11. Coordination of public awareness efforts

  12. Continuation and expansion of Vision 20/20 working groups and collaborative partnerships

  13. Engagement of people with epilepsy and their families in education, dissemination, and advocacy for improved epilepsy care and services

To comment on this report, the nice thing about it is that everyone agrees. There is complete consensus in the epilepsy community that these are all worthwhile goals. What makes this report special, though, is that it has put epilepsy on the national agenda in the world of healthcare. In addition, there are a few refinements to our understanding and the way we talk about epilepsy.

As I mentioned earlier, we are not talking about epilepsies because epilepsy is clearly a spectrum disorder. There are people with epilepsy who have 1 seizure a year and others who are completely controlled, and yet there are others who have seizures every day with many comorbidities.

This concept was addressed recently. I had the privilege to participate in a new 3-volume textbook called Atlas of the Epilepsies.This is recognition that we are dealing with a spectrum disorder.

The other important point in the 13 recommendations is the importance of comorbidities. Years ago we talked about people with epilepsy as having a problem of seizures, and, of course, that is the prime problem; but it was felt that if we could just control the seizures, everything else will go away. As important as it is to control seizures, it is also important to detect and treat comorbidities.

Gregory Holmes, panelist and Chair of Neurology at Dartmouth Medical School in Hanover, New Hampshire, was one of the panelists and he rightly said that "the devil is in the details" regarding the implementation of these 13 recommendations. But since we all agree and these are goals that we have been working towards for many years, the new recommendations for IOM stand to improve budgetary allocations and strategies for helping people with epilepsy.

I would like to talk about a poster, "The Cost of Implementing a Nationwide Program to Decrease the Epilepsy Treatment Gap in a Low-Income, High-Gap Country."[2] This was a really interesting study. The investigators were Kansembe and colleagues, and the lead author was Gretchen Birbeck, who goes to Zambia every year and has done a lot of work there in epilepsy. What they decided to look at in this developing country was how much it would really cost to take good care of everyone with epilepsy, and they came up with a 3-tiered program.

At a primary level it would cost $13.58 per person per year, which would consist of a visit to a healthcare provider, a malaria smear, and a prescription of phenobarbitone. At a secondary level, if the patient continued to have seizures, an HIV test and a lumbar puncture would be included; this would cost $18.81. And if this wasn't enough, tertiary-level care would include a CT scan and other drug choices, such as carbamazepine, valproic acid, and phenytoin. In many countries these would not be our first choices, but because these are older drugs they are less expensive. Tertiary-level care would cost $61.63 per person per year.

In addition, it would cost $1.39 per person per year to train 10% of primary healthcare workers and $6.62 per person per year for social marketing to increase clinic attendance -- not only for the resources to be available to treat epilepsy but also for the people with epilepsy, who need to know that those resources are there and that it is worth the time and effort required to get to the local clinic.

The second poster I would like to talk about is "Characteristics of Users of the Epilepsy Community PatientsLikeMe.com."[3] PatientsLikeMe.com is a product of our new social networking age. This is a Website for patients that was founded in 2004. It now has more than 130,000 participants representing more than 1300 diseases. The concept is that people who have a certain disease, such as epilepsy or diabetes, can go there and share the details of their disease -- for example, "This is how many seizures I had this week. These are the drugs that I take" -- and learn from other patients, or learn from their experiences. In addition, this information can be aggregated and used to learn what is happening in a large population, and surveys can be done. Of course, all the information is anonymous; the patients aren't identified by name.

In 2010 with support from the UCB drug company (Brussels, Belgium), an epilepsy group was started. What I am going to tell you about is a symptom survey that was done by Dimova and colleagues[3] involving 1914 patients who completed the survey. This was a group that was 71% women, whose mean age was 37 years, and the mean time since their diagnosis was 17 years -- so these were people with well-established epilepsy. On the Website they filled out a symptom checklist, and the results were very interesting. Of these participants:

  • 60.3% complained of memory problems;

  • 53.4% reported decreased concentration; and

  • 49.5 complained of fatigue.

  • Quality of life (measured on a quality-of-life scale) significantly decreased if there was 1 or more seizures in the last 4 weeks.

  • Depression and anxiety were increased if there was a recent seizure.

One could conclude that, at least of patients who answered the survey (which was almost 2000 patients), half are having very significant cognitive side effects either from their medications or from the epilepsy itself. The other message is that control of seizures is very important, not just to control the seizures and prevent injuries but also to improve quality of life and to help address depression and anxiety. These are important comorbidities that need to be addressed specifically, and it looks as if they might improve if the seizures are controlled.

The last study I would like to talk to you about is one that I conducted with my colleagues at Accordant Health Services.[4] We were particularly interested in comorbidities -- how they affect people with epilepsy and how they affect the cost of care. We screened 5 million adults from 10 commercial health plans and were able to identify 8842 patients, 52% of whom were men, 48% were women, with an average age of 35 years. All of these patients had epilepsy. When we looked at comorbidities, 50% of this group had comorbidities. The other group had only epilepsy. The top 5 comorbidities were psychiatric, hypertension, hyperlipidemia, asthma, and diabetes.

We looked at the number of comorbidities these patients had and the cost of care for these comorbidities (Table).

Table. Comorbidities in Patients With Epilepsy and Monthly Cost of Care

% of Patients Number of Comorbidities Monthly Cost of Care
50% 0 $329
23% 1 $1292
14% 2 $1804
6% 3 $2553
2% 4 $3002
1% 5 $3176


The message is, when you take care of a patient with epilepsy, you need to identify their comorbidities, treat them, and include that in the budget for caring for patients with epilepsy.

In conclusion, I have touched on just a few topics: the IOM report, epilepsy health in Zambia, online patient communities, and the importance of comorbidities in epilepsy with respect to patient care and cost. I wish I had more time to address other interesting abstracts, and there are many. Thank you for listening. I am going to go back to the meeting. There are still several poster sessions left. Please check my blog for more updates from the American Academy of Neurology meeting here in New Orleans, Louisiana.

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