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 Educating Patients On Sudden Death Syndrome In Epilepsy

Recent studies highlight tips for long term and post-acute care providers to help patients and residents with epilepsy achieve freedom from seizures.

 

Orrin Devinsky, MD
For people living with epilepsy, achieving freedom from seizures is the ultimate goal of treatment, and health care professionals in long term and post-acute care (LT/PAC) settings have an important role to play in helping patients and residents with epilepsy achieve this goal.
 
This is especially true in the case of older patients. Although epilepsy is often considered a disorder of childhood, it can begin at any age, and in some people, it persists from childhood
to old age.
 
There are many reasons that the possibility of seizures in elderly patients and residents needs to be taken very seriously. Elderly adults are often more sensitive than younger people to a variety of mental, physical, and environmental stressors that can trigger seizures. They are also more likely to develop many medical, neurological, and psychiatric disorders, some of which can make seizures more likely to occur. Stroke, for example, is the most frequent cause of seizures that begin in later life.
 
Frequently, people with epilepsy, and even their health care teams, mistakenly believe that seizures are controlled if the person has them infrequently or in a predictable manner. The fact is that even one seizure can have serious consequences. In the most severe cases, it can lead to Sudden Unexpected Death in Epilepsy (SUDEP), the leading epilepsy-related cause of death.
 
Despite striking an estimated one in 1,000 adults in the United States with epilepsy each year, SUDEP is not frequently discussed by patients and their health care providers. This is especially tragic because SUDEP is so closely linked with uncontrolled seizures (among patients with uncontrolled seizures, the risk of SUDEP increases to one in 150), and any discussion of controlling seizures is an important—and often missed—opportunity to educate patients about SUDEP.

Aim For Zero Deaths From SUDEP

LT/PAC providers are uniquely positioned to help educate people with epilepsy and their families about the importance of achieving seizure control and how these key behaviors can help.

To help drive discussion of SUDEP, the Epilepsy Foundation’s SUDEP Institute recently issued a special expert consensus report, #AimForZero: Striving Toward a Future Free from Sudden Unexpected Death in Epilepsy. The new report is part of an initiative to motivate people with epilepsy to strive for their best possible seizure control to reduce the risk of SUDEP, speak with their health care team about SUDEP, and use the #AimForZero hashtag to drive discussions of SUDEP on social media.

The report highlights four actions that people with epilepsy can take, and that LT/PAC providers can help instill in their patients and residents with epilepsy, to reduce the risk of SUDEP:

1. Taking epilepsy medications as prescribed is critical because these medicines are only effective when taken regularly. The brain needs a constant supply of seizure medicine to continue to stop and prevent seizures. When doses are missed or the medicine is taken irregularly, the level of medicine in the body decreases. Changing levels increases the risk of more seizures.

2. Getting enough sleep helps patients avoid sleep deprivation, which can trigger seizures. The recommended amount of sleep for adults is seven to eight hours. If people with epilepsy are not getting the recommended amount of sleep, do not wake up feeling rested, or do not have energy for their daily activities, they should work with their health care provider to find ways to ensure they are getting enough sleep.

3. Limiting alcohol consumption is important because seizure medicines can lower the tolerance for alcohol, and people with epilepsy are at a higher risk of seizures after drinking alcoholic beverages. All people with epilepsy are at a high risk of seizures after drinking three or more alcoholic beverages.

According to a 2016 survey of 1,000 people with epilepsy and their caregivers, only two out of five people surveyed with epilepsy avoid alcohol.

4. Finally, striving to stop seizures motivates people with epilepsy and their caregivers to strive for zero seizures and talk to their health care providers about the risk of continued seizures and SUDEP. Regardless of one’s current level of seizure control, there are many proactive steps people with epilepsy can take once they have committed to exploring all options to stop seizures. These range from identifying and tracking seizure triggers to exploring epilepsy surgery or devices with an epilepsy specialist.

Survey Reveals Patient, Caregiver Insights

To inform its #AimForZero campaign, the SUDEP Institute conducted a survey in May 2016 of more than 1,000 people with epilepsy and their caregivers to learn more about these populations’ knowledge of SUDEP and associated risk factors. The results, available at epilepsy.com, provide valuable insights that can help guide discussions about seizure control and SUDEP.

When it comes to what patients and caregivers consider “good seizure control,” only about half of those surveyed define it as “no seizures of any type.”

Only about a third of respondents felt that having continued seizures was extremely risky.

Almost all (95 percent) of caregivers and nearly two in three (63 percent) respondents with epilepsy worry about death from epilepsy or seizures.

Fewer than one in five (18 percent) respondents with epilepsy and slightly more than one in four (27 percent) caregivers reported that they’ve had a discussion about SUDEP with a health care provider.

Forty percent of patients—and nearly half of caregivers—say that learning more about SUDEP could make a difference in how they approach seizure control.

First Step: Communicate

Educational initiatives like #AimForZero can help raise awareness of SUDEP, but doctor-patient discussions during regular visits are immeasurably important opportunities to discuss SUDEP.

Unfortunately, these conversations are not happening enough. Health care professionals are often reluctant to discuss SUDEP because patients and residents’ families may not be receptive to discussing the possibility of death from epilepsy.

This makes it even more important for LT/PAC providers to encourage patients and residents with epilepsy to initiate discussions of SUDEP with their physicians.

Health care professionals, patients, residents, and caregivers must all be part of the effort to raise awareness about the risks of having seizures and help people living with epilepsy take action to reduce these risks.

To learn more about SUDEP and access resources about SUDEP prevention, visit epilepsy.com/AimForZero.
 
Orrin Devinsky, MD, is professor of neurology, neurosurgery, and psychiatry at the New York University School of Medicine. He is a principal investigator for the National Institutes of Health Center for SUDEP Research. He can be reached at od4@nyu.edu.
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