Senior Editor's Note:
The AED series is nearly complete. We have added four new seizure medicine sheets that can be found at http://www.epilepsy.com/epilepsy/seizure_medicines.html
To learn why we believe this series is so important for patients, families, caregivers, and physicians, please read this interview with Patricia Osborn Shafer.

An important aspect in epilepsy treatment is the patient taking responsibility for taking care of him or herself based on directions from health care professionals. This is called self-management. Physicians or nurses have expertise in prescribing medication. However, according to Patricia Osborne Shafer, RN, MN, a resource specialist with epilepsy.com, “It is the person taking the medicine or the family that needs to develop an understanding of how to take the medicine safely and appropriately in order for it to work effectively.” Towards this goal, she has been refining a project that involves a series of Seizure Medicine sheets that are written in easy-to-understand language. She has been working closely with Barry Gidal, PharmD, a board member of epilepsy.com, and his students at the University of Wisconsin-Madison. The sheets were first devised by Dr. Gidal, and Ms. Shafer has been enhancing the information sheets through her work with focus groups. Epilepsy.com spoke with Ms. Shafer about this new resource.

Why are the AED sheets so important?

While physicians and prescribing providers understand the medications, it is sometimes difficult to convey this information to patients. With visits getting shorter and shorter, there just doesn’t seem to be enough time to explain why the drugs are prescribed, what the patient can expect from the medicine, and how the medicine should be taken.

And keep in mind that those with epilepsy may have a further challenge with retaining the large amount of information given them during a visit. Therefore, verbal instructions with regard to medication use can be easily misinterpreted. While it is true that pharmacists give out information sheets, many of these are very generic and are not written by an epilepsy specialist.

How are the AED sheets on epilepsy.com different than the standard drug handouts?

The instructions are carefully written in a usable and readable format. We see them as a way of strengthening the patient-physician partnership. Dr. Gidal developed the content for these sheets, emphasizing some of the pertinent points for those with epilepsy. And we made them workable for people with epilepsy. Some users from epilepsy.com even helped review them!

How are these AED sheets to be used?

These AED sheets are intended to provide basic instructions that providers can use to supplement individualized instructions to patients. Clinicians can download or print these directly from http://professionals.epilepsy.com and give them to patients during office visits. Or conversely, patients can print them out and take the sheets with them to their appointments.

How can someone get more in-depth information about seizure medicines?

On each sheet, we stress the need to go to our website to get more in-depth information. For example, there is a “Seizure Medication” database at: http://www.epilepsy.com/epilepsy/seizure_medicines.html

A large part of managing epilepsy safely is learning about and understanding drug interactions. We have developed a “Drug Interaction” section on our professional site, which is tailored for clinicians, but can also be handed out to patients. See: http://professionals.epilepsy.com/page/doclib.html.

Since the cost of medicine is a major concern today, we encourage people with epilepsy to look at the links for patient assistance programs. These highlight ways for people to receive free or low-cost medicine. Visit: http://www.epilepsy.com/epilepsy/drugassist_links.html

What is your basic philosophy with regard to self-management?

Epilepsy self-management is a systematic and consumer-oriented approach that addresses how people manage their epilepsy and its impact on their daily life. It requires that people have correct information, skills, and supports. Research confirms what people with epilepsy have told us for many years – seizures are only one aspect of the challenge of living with epilepsy. However, medication management is probably the most vital since medication is the mainstay of treatment today.

We know that effective and safe medication management involves more than just reading information. However, epilepsy.com wants to make a difference by providing accurate, up-to-date information that is easily accessible to anyone who needs it. Our next steps will involve more tools and resources that people can use to make epilepsy management even easier. Towards that end, we would like patients to know what we know about the drugs and how they will react in their bodies.

(Patty Shafer was the recipient in December 2006 of the American Epilepsy Society’s J. Kiffin Penry Excellence in Epilepsy Award. The award recognizes individuals whose work has had a major impact on patient care and improved quality of life for persons with epilepsy.)

Edited by Steven Schachter, MD