IOM Report on Epilepsy Supports Comprehensive Approach

The recent

release of the Institute

of Medicine’s report

“Epilepsy Across the Spectrum: Promoting Health and Understanding” provides a

broad view of gaps in epilepsy diagnosis, treatment, and professional and

public education about this spectrum of disorders.

Dr. Joseph F. Drazkowski

The report provides a

glimpse of where the epilepsy community needs to be in the future. I’m not sure

that all of the recommendations are attainable in the immediate short term, but

I do think that the report has laudable goals as epilepsy is sure to become an

increasingly important health issue. It’s well known in the epilepsy world that

the elderly are disproportionately represented. As the population in the United States

ages and the number of baby boomers expands, they will require more care and

epilepsy services, not less. This tells me that the estimates in the report of

how many people have or will have epilepsy may be low. Certainly, if it’s not an

underestimate at this time, that number is certainly going to rise as the baby boomers

age.

Currently and

historically, there are certain images that are brought forth when you make the

diagnosis of epilepsy. There are all kinds of misconceptions about the

terminology. I think that standardizing the terminology used to discuss

epilepsy – as recommended in the report – will go a long way toward improving

understanding in providers, families, and persons with epilepsy.

While the committee

recommends looking at the prevention of epilepsy, I think that we have a long

way to go with regard to prevention. There are many modes of prevention.

Preventing injuries in high-impact sports such as football or motor sports is

one way of preventing epilepsy. However, prevention could take place in other

contexts after focused research. If two people present with seizure behavior,

we need to understand more fully why one person progresses to epilepsy and the

next person does not. If we can discern some of those factors, which I don’t

think are very well known at this time, we could prevent the development of

chronic seizures or epilepsy. We’re in our infancy in regard to that.

The report also

recommended epilepsy education for health professionals. Epilepsy is one of the

primary reasons for seeing a neurologist, but for the primary care provider or

other specialists, the number of people with epilepsy in their practice is

likely minimal. Most physicians can potentially manage a well-controlled

epilepsy patient, who is doing well taking a single medication and not having

any problems. However, in cases in which epilepsy is suspected but yet undiagnosed

or there’s intractability of seizures, a focused subspecialty evaluation should

be considered. This group may represent a significant portion of people with

epilepsy. No one would expect the family practitioner or the internist to care

for these complex individuals with medically refractory epilepsy who are taking

multiple medications, experiencing complex social challenges, or requiring a

surgical evaluation.

The committee also

emphasized and advocated for removing the considerable stigma associated with epilepsy

and raising public awareness of this spectrum of disorders. Right now, epilepsy

doesn’t seem have a champion for the disorder who has the cache to help raise

public awareness. The IOM report points out this often overlooked aspect of the

illness. Succeeding in the recommendation alone will go a long way to improving

the lives of people with epilepsy.

Dr. Joseph F. Drazkowski is with the department of

neurology at the Mayo Clinic, Scottsdale,

Ariz. He is the program director of

the Mayo’s fellowship in clinical neurophysiology, EEG, and epilepsy. He also

directs the EEG laboratory and codirects the epilepsy monitoring unit at the

Mayo Clinic Arizona.

His research interests have been focused primarily on social issues that

confront patients with epilepsy (especially driving and quality of life).